So I watched most of the food bank debate. Not at the time as my bendy spoonie arthur body wasn’t playing ball.
It was a sad sight to watch as Labour passionately recalled stories
of people, in desperate need in their constituencies. As Labour were
trying to make their point the coalition benches laughed, brayed &
tried to shout them down as they attempted to highlight the crisis that
is unfolding in this country, one of the richest countries in the world
where people are being propped up by food banks, charities as there
government continues to fail them.
The coalition benches made the whole Charade feel like the Goverement
was implying that poor people are just darn stupid, we’re beating them
with this rod with all the welfare cuts & telling them to work so
why arn’t they? Their problems would be resolved. If they are at food
banks they deserve nothing more, it is of their own doing.
The coalition further blamed people for poor budgeting skills but
didn’t understand that for many, when they reached the foodbanks they
have fallen so hard & so quickly & for others they have already
striped their outgoings down to the bone. If the end line is that you
need £60 & you only get £40, how are you supposed to win? Just
demonising people further isn’t the answer.
Most of the coalition MPs come from much more privileged backgrounds,
that have never had to deal with these problems. These MPs live in a
world where they get a food allowance, expenses & subsidised bars.
They have never had to hardcore budget like the people that end up at
food banks do. They’re in a parallel world were they constantly live
with their fingers in their ears & take their party’s doggy
statistics on face value.
The coalition put these policies in place & they’re just not
logical. If you speak to most, they agree that the system needed reform
but it needed to be fair, the coalition need to accept that there are
people that are just not able to work & that working isn’t the only
solution out of this kind of situation, that work doesn’t always pay
which can be seen by the increased number of people in work, forced to
rely on food banks as wages are low & commodities high.
The coalition throughout continued to state that the food banks began
under the last government which is indeed true but the explosion in the
number of food banks under this government demonstrates how much policy
is not working & that the simple truth is, that if social policy
was better there wouldn’t be anywhere near the demand that there is now.
If anyone agrees that its ok for people in this country to have to
rely on food banks, for children to be so grateful that they were given
chocolate because its one of the best things they have seen in a while
& that for the red cross to be doing its first appeal since world
war 2 for the people in the UK, then remember this; anyone can find
themselves in this situation & if you’re saying to yourself not me?
there have been many people before you that have said the same & yet
found themselves in a position they would never have seen coming.
These MPs call each other honourable members, if this is honour, its not an honour I recongnise.
Saturday, 21 December 2013
Saturday, 14 December 2013
17# Weekend cute, humour & awesome
My body has not wanted to do anything & hasn’t co-operated at all due to my arthritis flaring up & my hypermobility playing up. Don’t get my started on my stomach >.<
Hope everyone has a brilliant week to come
(I do not own the images but respect the awesome)
Wednesday, 11 December 2013
A Spoonie body, politics & a cute fluffy bunny.
So I haven’t been able to do much that I’ve wanted to do recently as
my body has been taking its sweet time to decide whether or not to heal
after my surgery & because I have been off my arthritis medication
for so long my body is taking a real battering with a lot of
inflammation in addition to what I normally have. Also with my arthritis
flaring up the fatigue has been worse with it. Fatigue as always is so
fricking inconvenient, with you not being asleep nor awake, losing hours
at a time.
It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”
So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.
Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.
I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.
Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.
They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.
http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html
This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.
I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.
We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.
Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.
So here is the little cutie
And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.
http://epetitions.direct.gov.uk/petitions/43154
It’s not been made easier when I have had to go out, mostly to hospital appointments & such. It’s not like its a new thing, ever since just before the last general election this kind of occurrence happens quite often whilst we’re out. When I get on the bus people look at me & see a girl with a stick & more often than not will take more time to judge the legitimacy of my condition than see that I’m about to topple over because the driver hasn’t waited until I have found a seat & I’m struggling to find a seat, as someone is lounging across the disabled seat or the “i’d like a bit more legroom seat”
So often I see these judgmental faces of people that don’t know me. It is often that people won’t offer you a seat until they have seen you nearly topple over because the bus driver doesn’t see you or is impatient and even then it is often begrudgingly.
Often me & Mr TechieCarer will be sitting on one of the disabled seats just waiting for the glares, the comments & even altercations to occur. The glares always happen even though my stick is clearly visible. We have started to talk to loudly about my condition to each other which usually suffices to quiet them down & realise that their judgement is incorrect. We have now come to the point that we will stick up for ourselves, even though we shouldn’t have to because arthritis & all the other conditions I have are not my fault & I have nothing to be sorry about.
I know this isn’t just me & although I have had people be verbally abusive, apart from one guy threatening to sit on me, thankfully nothing physical has happened. I also am grateful that there are people that are kind & thoughtful & they restore my glimmer of faith in humanity every time. I know that other disabled people have delt with much worse, thankfully my local bus company have started a zero tolerance policy towards disability hate crime which is greatly needed to show that this isn’t tolerated.
Another topic I have seen people have a problem with is people on benefits that have a mobile phone &/or animals. I might go into more detail about this at a later time but some people are more obsessed about other people having mobile phones or pets than being happy in their own life.
They don’t understand that mobile phones keep disabled people in contact with the hospital, Doctors & Carers & let them stay in contact with the outside world when their condition doesn’t allow them to go outside. Similarly pets give people confidence, comfort & companionship. They can also greatly help a disabled person reduce their awareness of their pain, even if only for a brief moment.
http://diaryofabenefitscrounger.blogspot.co.uk/2013/12/just-watch-this-please.html
This links in with an article where Sue Marsh highlights a film which shows how vital the Independent Living Fund is for people to provide basic things that able bodied people take for granted. It is also shown very clearly how much pets mean to disabled people & that no one should be this frightened of losing support.
I can also say after we sadly lost our bunny at such a young age, we did get another. Hes now about 7 months old & is doing really well apart from a very lucky scrape around a week ago.
We noticed his head was tilting to the side & one eye was rolling to the back of his head. I knew this wasn’t a good sign (head tilt) so we rushed him to the vet & the vet said it was either concision or Encephalitis (inflammation) caused by the parasite e.Cuniculi. They believe that over half of rabbits carry the parasite & are asymptomatic all their lives, with about 6% where the parasite becomes a problem causing inflammation. They think that its more likely to be e.Cuniculi because even if you held his head his eye still continued to move. He was given an anti infllammatory injection & panacur to control the e.Cuniculi.
Amazingly I can say that within 1hr & half his head tilt had resolved, as my vet said you wouldn’t know he had head tilt only hours before. He will still have his panacur for a while yet but with head tilt it is so vital that they get to the vet early. Although head tilt can be caused by a varying degree of underlying issues, for e.Cuniculi the quicker they get to the vet, the quicker they get anti inflammatory medication, the better the chance of reducing permanent damage.
So here is the little cutie
And finally the WoW Petition surpassed 100,000 signatures! I do not believe that the government will necessarily do anything positive that the petition asks for but the more we can highlight these issues & the more we can bring these issues to the attention of the general public, the better they will be informed of the injustices that are occurring.
http://epetitions.direct.gov.uk/petitions/43154
Saturday, 23 November 2013
Dr Who - An adventure through space & time *Spoliers*
So I’m a MASSIVE fan of Doctor who & on Thursday I watched “An adventure through space & time”. I can only refer to how the drama portrayed the people involved but I found it really interesting how the show was started & what a struggle it was for the first female producer & the first Indian director to make their way in the BBC at that time.
I understand that the drama came from a sentimental, idealist view point but Doctor Who has always retained a sentimental feeling throughout its long run. You only need to listen to the music to see it.
I found it incredibly touching how much William Hartnell grew to love the show even though he was known for his grumpiness & was described by some as being intolerant.
It was moving to see the first departure of a companion, the Doctor’s granddaughter’ leaving her in the serial “The Dalek Invasion of Earth”, where she had fallen in love with a freedom fighter. Susan says she must stay with the Doctor to care for him but the Doctor wishing for her happiness leaves her. He says to her that one day he will come back and not to be upset at his departure.
It was particularly interesting that they chose to include the scene of Hartnell standing at the mantel piece in his home breaking down expressing greatly how he didn’t want to leave the show. I don’t know if this event occurred in reality but it must of been particularly upsetting regardless that he couldn’t carry on with the show due to him increasingly forgetting his lines. I also couldn’t help but think about the resemblance to the scene just before David Tennant’s regeneration where the Doctor expresses how he didn’t want to go.
The final scene of note was when they reenacted William Hartnell’s final scene as the Doctor in the serial “The Tenth Planet” before his ‘regeneration’ into Patrick Troughton, before it was known as such. You see David Bradley, portraying Hartnell looking beside the console to find Matt Smith smiling back at him. This was obviously added but represents how all the doctors are all connected to one another.
Yes I know its sentimental but this is one of the things I feel is so unique about Doctor Who & at the time William Hartnell wouldn’t have necessarily realised how unique the show was. The Doctor never ‘dies’ instead the next actor is regenerated into the role. It’s not a “replacement” in the conventional sense, the actor doesn’t have the role “taken away” from him (like in a remake), instead what ever the Doctor has done within the show remains the case, isn’t over written by the next Doctor & is still referred to in the show.
He will always be the Doctor of that time period & is simply passing the torch onto the next for them to add something special to the role, as the Doctor goes on ever evolving with a shared history between them all.
The Doctor is a select club in which they never lose their title, they are the Doctor of their time & aren’t restricted in the same linear line as us as the Doctor says “Wibbly Wobbly Timey Wimey”
and I’m looking forward to the 50th anniversary show :)
Monday, 18 November 2013
A lack of understanding
So hi there!
So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.
I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.
I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?
My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.
In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.
It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.
Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.
So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)
Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.
In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.
The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.
So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.
So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)
By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.
So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.
When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.
In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.
They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.
So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.
However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.
So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.
The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.
So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.
So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’
I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.
The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.
However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.
I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.
If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.
Anyway I hope that I can get back to normal posting :)
So I haven’t posted in a while but with good reason as my health has taken a pretty big beating.
I’ve been off my arthritis meds for over the last 4 months as the medication I take means that I am immune suppressed & with my rheumatology team greatly concerned that I might have an infection, I haven’t been able to take it & they were right to be concerned.
I’d had a swelling in the back of my mouth. There was massive debate, a lot of to & fro, back & forth from the dentist to the doctor.Is it an abscess, sinusitis or trigeminal neuralgia?
My GP thought that It may be trigeminal neuralgia due to the intense brief but repeated pain I was having.
In the end? None of the above, instead a large cyst with a bucket load of infection thrown in for good measure. It also seems more likely now that it was the cyst pressing on the nerve than trigeminal neuralgia.
It took until I saw my hospitals maxillofacial team to find out what the problem was but even then I had seen a junior doctor & they didn’t fully understand how significant the problem was, even then initially thinking that I could have it taken out under local anesthetic & sedation.
Unfortunately though it seemed that the doctor underestimated how significant it was & with her trying to examine it, aggravated it further as when I woke up the next day the swelling had increased along with the pain.
So I rang up maxillofacial, & they advised us to go to the hospital which we did. When we arrived a triage nurse came over to me concerned how pale I was & what was wrong & sending us to wait in the waiting room. Eventually we saw a juniour doctor, tried to explain that I was immune suppressed, that I had arthritis, that I was in pain & It seemed that pus was draining from the lump (yep, sorry I know that ones a bit gross, I was there >.<)
Junior comes back from ‘consulting’ with his seniors saying I could go home. We re-emphasised that there is something really wrong, he goes back to his seniors, the answer is still no, you need to wait for us to do it routinely.
In absolute despair I tell the A & E sister whats wrong & she agrees that its not right & will do all she can. She asks the junior, he sticks with his decision but says a senior doctor is coming in & if that doesn’t work she said I could see one of the A & E doctors.
The sister was amazing running around & chasing up anything she could, she fought for me & for that I am truly grateful. She was like a bulldog that just wouldn’t let it go because she knew that I needed treating urgently.
So she gets the senior to see me before he has even taken his coat off & within about 5 minute he had admitted me for IV antibiotics with the hope of surgery in the next day or two.
So the next day the junior comes on the ward, you can go home, take your arthritis medication & if you want it doing quicker your dentist can do it (which isn’t the case)
By this point, I feel so ill that I cant fight but my partner takes over & stubbornly says we want to see the registrar.
So we wait, they take away my bed & then the registrar sees me. He examines it & then pokes it really hard resulting in me uncontrollably crying out in pain.
When the registrar finishes he tells me not to eat or drink because I might need surgery in the next few hours. He sits & explains, that the junior hadn’t told him that there was pus, didn’t tell him I had arthritis & didn’t tell him that I was immune suppressed which had he had known he wouldn’t have told the junior to send me home. The junior wasn’t seen on the ward after that.
In the end it was agreed that it was best that I went home with a strong dose of antibiotics because although the cyst could be removed in emergency surgery, the x-rays were limited in what they showed them. They also didn’t know if there was a hole between my mouth & my sinus & what amount of infection could pour into there, which wouldn’t have been good & they didn’t know if any restoration work would be needed that would have been difficult to perform on an emergency basis.
They agreed that having time to lessen the infection & having a full amount of staff would be the safest option.
So I told the nurses that I would need a bed & not a theatre trolley due to my arthritis as I was in enough pain due to being in a flare up along side the cyst.
However, this didn’t happen the ward sister tried to arrange a bed but the nurse that was ‘looking after’ me couldn’t understand what the fuss was about.
So very anxiously I went down to surgery, luckily the surgeons kept their word resulting in four surgeons doing my surgery. Three hours later, I was out & recovering on a very uncomfortable trolley with two teeth missing & two sets of many stitches.
The surgeon comes around tells me they got it all out but the cyst running out of space where it was had pressed upon the bone separating the mouth & sinuses destroying it as it was trying to push in leaving me with a hole into the sinus. For non immune suppressed people they can risk leaving the hole but for someone like me that is its simply too risky so they made a graft sealing the hole with tissue in the hope that bone will follow behind.
So whilst groggy from the surgery I had staggered over to my partner who was not allowed to sit with me, to get hair clips as I was conscious enough to know that I didn’t want the blood that was coming up going my hair. This staggered painful hobbling constituted ‘running off the ward’ so expressed one of the nurses. This was accompanied with one of the care assistants getting angry at me when I shied away from the ear thermometer, one of the other care assistants had tried twice to check my temperature with me shying away both times. The first care assistants tells the other, she comes in & shoves the thermometer in the ear stating angrily that ” You had surgery on your mouth, not your ears,” not realising that her shoving the ear thermometer in was creating unequal pressure in my ears & head as the graft they had placed over the hole hadn’t had enough time to create a complete seal.
So after some time we were about to go home when the nurse from before whilst discharging us thought it was perfectly ok to ask both me & my partner what we did & proceed to say we needed purpose & focus in our lives that only a job could give & that it was evidence enough that i was fine when i ‘ran off the ward’
I find it extremely sad that this nurse could both judge me quickly & be so ignorant to how disabling arthritis can be. It is after all the reason that I ultimately ended up in hospital. The medication I take means that I’m immune suppressed & much more susceptible to these type of things. This is what some people don’t understand the stopping & starting of medication & the infections & effects as result of it & that this isn’t even with trying to understanding my condition & that like many, I don’t just have one disability or illness but multiple.
The other factor I have learned living with a chronic condition is that doctors can get treatment wrong. It is expected that doctors know all & that the treatment they give is always in your best interests.
However more & more I have noticed that this isn’t always the case & I know more & more they don’t always know everything & that what they may prescribe may not be in my best interests & in this I know i’m not alone & there are many people with chronic conditions that experience the same. We’re also not allowed to question it, do & you risk becoming one of ‘those’ patients which may result in some nurses that won’t answer your call bell.
I’m now hoping that the wounds will heal but after I get the all clear I then have to start the process of seeing my rheumatology team to resume my arthritis medication along with other medical appointments.
If anyone reading this has ever had a go at a disabled person or is resentful its not as simple as you think. There are many complications that disabled people face from the side effects of there conditions, to the complications with treatment on top of dealing with the condition.
Anyway I hope that I can get back to normal posting :)
Sunday, 17 November 2013
16# Weekend cute, humour & awesome
But anyway please enjoy LSD kitty :)
(I do not own the images but respect the awesome)
Sunday, 10 November 2013
Remember
I just wanted to say on this Rememberance Sunday….
I don’t condone war as I’m a hippy at heart but I will never fully understand the magnitude of what people had to face when going to war in both world war 1 & 2. They fought for everyone existence, for you to do as you please & to be honest I can’t see how they had any choice. It is also sad that people have to live with scars on their country’s past.
Although I may not believe in the legitimacy off other wars, I respect people who have served & just would wish for a future where politicians would always consider the righteousness of their actions & truly realize that the figures they send to fight these wars are people, not figures on a sheet of paper.
And that’s it, we remember the people.
They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.
I would also like to apolagise for not posting in awhile I havn’t been well & ended up in hospital but I should be doing a post shortly
I don’t condone war as I’m a hippy at heart but I will never fully understand the magnitude of what people had to face when going to war in both world war 1 & 2. They fought for everyone existence, for you to do as you please & to be honest I can’t see how they had any choice. It is also sad that people have to live with scars on their country’s past.
Although I may not believe in the legitimacy off other wars, I respect people who have served & just would wish for a future where politicians would always consider the righteousness of their actions & truly realize that the figures they send to fight these wars are people, not figures on a sheet of paper.
And that’s it, we remember the people.
They shall grow not old, as we that are left grow old:
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning,
We will remember them.
I would also like to apolagise for not posting in awhile I havn’t been well & ended up in hospital but I should be doing a post shortly
Sunday, 13 October 2013
World Arthritis Day
My diagnosis
I struggled tremendously to get diagnosed, it took years. I started experiencing mild niggling symptoms when I was about 15 on & off until I was about 18 when the symptoms got much worse beginning in my knee. I was sent to see a physiotherapist by my doctor at the time, as I had a golf ball type swelling on the top of my knee & he was the first to suggest & was convinced that I had arthritis. So off I went back to the doctors to tell them what he had said but they were convinced that I was far too young to have arthritis. In the end they conceded enough that they agreed that there may be at least something wrong with the mechanical side so sent me to orthopedics, one MRI later & they confirmed that it was arthritis.
1. You’re too young to have arthritis & why do you walk with a stick?
I have had full blown arguments in the past with people that have argued, sometimes nastily, that I couldn’t possibly have arthritis because I was too young. Most people that have approached me, have thought that I walk with a stick because I must of hurt my leg in some way, they never think that its arthritis.
Unfortunately people are less aware that young children can have arthritis so it really affects people of any age.
2. What kind of things do people say when people find out I have arthritis.
Can’t they cure it? No at best they can manage it
But I’ve read that supplements, diet & exercise changes can cure it? Again no, although a healthy diet & low impact exercise (which not everyone can do) would help a little for people with inflammatory arthritis, supplements such as Glucosamine, diet & exercise isn’t a cure.
I’ve tried to think of the best way to explain inflammatory arthritis. I live with it & I’m still trying to understand it. But I’m going to try & explain it briefly
Inflammation occurs naturally when people are sick or injured, if you did a blood test some of the same markers may come up in someone with inflammatory arthritis but they would also have additional blood markers. Someone with inflammatory arthritis still gets inflammation if they’re sick or injured but their body also produces an inflammatory response that starts to attack the body affecting bones, tissue & cartilage. People experience an array of symptoms including pain, discomfort, stiffness & fatigue & scientists are still not certain as to why it occurs
This is in contrast to osteoarthritis which is degenerative & without the inflammatory response seen in inflammatory arthritis.
People with osteoarthritis still have pain & discomfort but that’s because there is damage present whereas with inflammatory arthritis the pain can be present even before bone damage has occurred as well as after.
This is why for example for some people with osteoarthritis, exercise to strengthen the muscles around an affected joint can help support it, whereas although it is beneficial to have strong muscles for someone with inflammatory arthritis, unless the inflammatory response is treated with medication, minimal benefit could be achieved and this seems to be where peoples’ misunderstanding lies.
3. So if you have a certain type of arthritis is everybody affected the same way?
You guessed it, Nope. I have Psoriatic Arthritis which some people may be affected quite mildly by but i’m one of the few that get affectef quite significantly. I also like many have additional conditions as well as my arthritis.
4. So what is it like dealing with your arthritis?
My day to day living - I have difficulty doing various tasks even personal tasks (that i’m not going into) but even being able to brush my teeth can be too painful because of my wrist, similarly with other tasks around the house. This also includes any task that includes sitting, standing or walking. Kneeling is out of the question.
Going out - For example you may want to go to an event so you book tickets & go. For someone like me you would need to….
Check accessibility. Are there seats? can they provide wheelchairs? if not, can we hire one nearby? what if there’s too many people & we start getting crushed? & then plan the travel arrangements & then back up arrangements & booking assistance for the travel arrangements & so forth.
Then additionally we have to deal with various GPs, Consultants, nurse & physiotherapist appointments & such & not just for my arthritis. It’s common for me to have three appointments a week but as my Gp said dealing with long term chronic conditions is like doing a full time job when you’re sick all the time.
I’m not going to go into more of the personal details of how my arthritis affects me because I have to explain so often to doctors & in forms that if I don’t have to I don’t want to :)
However, I am very thankful & lucky to have the support of my amazing fiancee & carer who helps me greatly.
5. How do people treat you?
People seem to fit into three categories.
The ones in their own bubble who don’t see you so may inadvertently walk into you or ignore you without knowing.
The people that do see you, may glare at you, muttering things at you or verbally assault you. Unfortunately these people believe the propaganda, that there is huge benefit fraud, that things are harsher for them because people are getting huge amounts in benefits & receive things that they don’t.
I think that there is a misunderstanding of benefit entitlement, that people believe you must be bed bound to qualify & they don’t understand how difficult it is to manage a disability & maintain any level of normality.
And finally the last group of people that have an understanding of disability, usually because they know someone that has a disability.
For me personally, although at the start I had just a few niggles, now I’m always in some degree of pain (not just because of my arthritis) & things that you never needed to consider without the disease you now have to. I have found a great way to explain the types of compromises that people have to do when dealing with a disability is through the spoon theory.
I’ve covered a fraction of what its like to have arthritis but the best thing to come through more awareness, would be for people to see a girl struggling to get on a bus with stick in hand & instead of ignoring her existence or thinking shes a fraud, offer a seat before she stumbles? Please educate yourself as intolerance can be worse than dealing with the condition itself.
There are many types of muscular diseases. Depending on the source there are up to 200 hundred different types which shows how there needs to be more awareness & that for each type we are all affected individually. People need to start asking if they’re unsure (reasonable questions) & for us to be open to answering them.
Stay awesome & at all times keep hold of your spoons :)
Useful resources on arthritis
Arthritis Care - For support & information, they have a helpline & forum
Arthritis Research -For further information
What I have written about is only a fraction about my condition & what I experience. Each condition can affect each person differently. If you are worried or want further advise there are many resources available don’t worry in silence :)
Saturday, 5 October 2013
Go back & do it again! The Conservative party conference
So just in case you haven’t been fortunate enough to escape to a
distant land or planet or you haven’t been sticking your fingers in your
ears with a blindfold on & have being going ” La la la, I can’t
here you” you will be aware that the Conservative party conference
finished this week.
There have been announcements & leaked documents & to say their ‘policies’ have been hastenly rushed seems like the understatement of the century. It’s like they were doing their homework last minute on the bus whilst gigging with their friends, planning to pick on the vulnerable kid at break, whilst making sure they snatch any treats from any of the other kids.
So out of the array of topics that came out just before the conference & during.
1.The Mirror - Working for benefits
The conservatives seemed to have discarded the persona a little while ago that we are all in this together, leaning more towards the principle that there are whole groups that are just undeserving.
This seems to extend especially to those claiming jobseekers allowance, that they are content to ‘languish’ on benefits & that no one wants to get a job.
So they have proposed that to get JSA claimants off benefits & into a job & to stop the ‘Something for nothing culture’, claimants will undertake 30hrs a week on a community work scheme on top of searching for a job.
But the real reason for this is to appease the proportion of society that has the belief that it is one big party living on benefits & that the majority have no interest in looking for a job, whereas in fact its the exact opposite.
I can see this hindering people with disabilities who claim jobseekers. Will there be flexibility in the scheme? & how are people going to be available for job interviews as most would be scheduled for between 9-5.
On this blog Where’s the benefit they have highlighted many people that were claiming other benefits, have been pushed on to JSA despite being in no fit state to work may now be forced to undergo unsuitable treatment or risk losing their benefits.
And just in case you want to complain, there are plans to attempt to withdraw from the Europen Convention on Human Rights, with proposals of new anti-union laws.
2. The Telegraph - Human whatsits?
In the Telegraph, it further explains the Government’s reasons from withdrawing from the European Convention on Human Rights. I can understand how the Government & the public don’t want dangerous criminals in the country & they want them removed but my concern would be whilst they’re there, will they withdraw other rights for joe public? As with the possible new anti-union laws.
3. The guardian - Plant what?
So just before the conference Mr Osbourne stated that “He doesn’t want to be at the forefront of tackling climate change”. This seems to be because Osbourne believes that other countries should also contribute their own share towards alleviating the impact of climate change. I agree but instead of continuing to do the responsible thing, it seems to be more along the lines of “Well they’re not picking up their rubbish, so why should we?”
This isn’t even approaching the real issue, that the living wage is too low & the profit made on energy too high. Personally I would find it more logical to negotiate fairer energy prices but I have the sneaking suspicion that this wouldn’t be as ‘profitable’ for certain members of society.
But on an important point we need to do what we can to be more responsible with the energy we use & the way we provide it. The Earth does go through natural cycles of climate change, it has done through out its history but we are accelerating this one significantly & we must modify our behavior to be able to leave the planet to further generations for them to appreciate it & not to have a harsher existence brought on through our actions.
4. The Daily Mail - there are no words
So I read this……
There has been a green paper leaked that has set out a “Thermal Reduction Initiative” which would be a 9% duty set on champagne sold in public places. According to the paper, chilled champagne adds on average an additional 0.5% to a bar’s carbon footprint. (& no I did not check this one!! but their stats have been awful so don’t take it on face value)
This IS apparently being pushed as an environmental initiative even though it won’t include Prosecco or Cava even though these also are best served chilled.
My brain further couldn’t believe what it was reading when apparently the Lib Dems had taken the energy to lobby to exempt Pomagne & Babycham!
Now whilst making sure to wear my most serious face, this isn’t an environmental measure as it would include every chilled wine & such, this is just for publicity because of what happened with the pastry tax. I would love to know why the Lib Dems put in all that effort to get Pomagne & Babycham exempt, I would assume that its either because it aided the Lib Dems cause in some way or someone has a real liken for it!
When reading these types of stories, you cant help but think that if they put this much effort into this, why aren’t significant policy changes that affect vulnerable people being thoroughly tested to ensure the smallest amount of people fall through the cracks, unfortunately it probably just comes down to profit.
5. The Guardian - Why aren’t YOU celebrating suffering?
This I find disgusting. Leaked documents seem to show that IDS was trying to find a way of making it even more difficult for sick & disabled people to claim benefits. He was also trying to see if he could put in place additional secondary legislation without the need to go through Parliament to give Jobcentres more powers to sanction people.
The article also goes on to explain how the DWP has had its ‘celebration’ week of new tougher sanctions indefinitely suspended.
I find this both alarming & disturbing that they were going to ‘celebrate’ cutting peoples money. I also find it disturbing that he was trying to circumvent Parliament.
It seems that as long as the people that could carry some of the burden don’t, the vulnerable will continue to carry much more of a disproportional share.
So many different benefits & services have been affected. With it being falsely implied that something is the majority, like most claimants are content languishing on benefits & that they get payed exorbitant amounts of money, whereas instead its a very small minority.
I just wish more than anything else that people wouldn’t read or watch something & take it on face value. The spread of inaccurate figures & facts just breeds ignorance.
I have seen & heard so many discussions & comments that include “I know someone who knows someone thats a cheat” or ” There’s someone in my street that’s perfectly capable of working” & this frustrates the disabled community immensely.
Because more often than not they don’t, often it is a misunderstanding or lack of understanding of the individuals disability or entitlement. You don’t know what goes on when they step through their door, taking painkillers, resting, vomiting & such.
It also doesn’t help with the propaganda fed by certain areas of society making people believe that benefits are too high, whereas in fact wages are too low.
Just remember, to get the complete picture you must read as much as you can from as many sources as you can. Once you block your mind to the possibility that you are wrong, you will never learn anything new.
And to finish this post (thank god conferences aren’t every week, this took many breaks & many days) the Conservatives have been doing a #sharethefacts about how their existing policies have been & their new polices will help people but through out the conference, the only #sharethefact tag i could find appropriate to sum up the conference was this……….
There have been announcements & leaked documents & to say their ‘policies’ have been hastenly rushed seems like the understatement of the century. It’s like they were doing their homework last minute on the bus whilst gigging with their friends, planning to pick on the vulnerable kid at break, whilst making sure they snatch any treats from any of the other kids.
So out of the array of topics that came out just before the conference & during.
1.The Mirror - Working for benefits
The conservatives seemed to have discarded the persona a little while ago that we are all in this together, leaning more towards the principle that there are whole groups that are just undeserving.
This seems to extend especially to those claiming jobseekers allowance, that they are content to ‘languish’ on benefits & that no one wants to get a job.
So they have proposed that to get JSA claimants off benefits & into a job & to stop the ‘Something for nothing culture’, claimants will undertake 30hrs a week on a community work scheme on top of searching for a job.
But the real reason for this is to appease the proportion of society that has the belief that it is one big party living on benefits & that the majority have no interest in looking for a job, whereas in fact its the exact opposite.
I can see this hindering people with disabilities who claim jobseekers. Will there be flexibility in the scheme? & how are people going to be available for job interviews as most would be scheduled for between 9-5.
On this blog Where’s the benefit they have highlighted many people that were claiming other benefits, have been pushed on to JSA despite being in no fit state to work may now be forced to undergo unsuitable treatment or risk losing their benefits.
And just in case you want to complain, there are plans to attempt to withdraw from the Europen Convention on Human Rights, with proposals of new anti-union laws.
2. The Telegraph - Human whatsits?
In the Telegraph, it further explains the Government’s reasons from withdrawing from the European Convention on Human Rights. I can understand how the Government & the public don’t want dangerous criminals in the country & they want them removed but my concern would be whilst they’re there, will they withdraw other rights for joe public? As with the possible new anti-union laws.
3. The guardian - Plant what?
So just before the conference Mr Osbourne stated that “He doesn’t want to be at the forefront of tackling climate change”. This seems to be because Osbourne believes that other countries should also contribute their own share towards alleviating the impact of climate change. I agree but instead of continuing to do the responsible thing, it seems to be more along the lines of “Well they’re not picking up their rubbish, so why should we?”
This isn’t even approaching the real issue, that the living wage is too low & the profit made on energy too high. Personally I would find it more logical to negotiate fairer energy prices but I have the sneaking suspicion that this wouldn’t be as ‘profitable’ for certain members of society.
But on an important point we need to do what we can to be more responsible with the energy we use & the way we provide it. The Earth does go through natural cycles of climate change, it has done through out its history but we are accelerating this one significantly & we must modify our behavior to be able to leave the planet to further generations for them to appreciate it & not to have a harsher existence brought on through our actions.
4. The Daily Mail - there are no words
So I read this……
There has been a green paper leaked that has set out a “Thermal Reduction Initiative” which would be a 9% duty set on champagne sold in public places. According to the paper, chilled champagne adds on average an additional 0.5% to a bar’s carbon footprint. (& no I did not check this one!! but their stats have been awful so don’t take it on face value)
This IS apparently being pushed as an environmental initiative even though it won’t include Prosecco or Cava even though these also are best served chilled.
My brain further couldn’t believe what it was reading when apparently the Lib Dems had taken the energy to lobby to exempt Pomagne & Babycham!
Now whilst making sure to wear my most serious face, this isn’t an environmental measure as it would include every chilled wine & such, this is just for publicity because of what happened with the pastry tax. I would love to know why the Lib Dems put in all that effort to get Pomagne & Babycham exempt, I would assume that its either because it aided the Lib Dems cause in some way or someone has a real liken for it!
When reading these types of stories, you cant help but think that if they put this much effort into this, why aren’t significant policy changes that affect vulnerable people being thoroughly tested to ensure the smallest amount of people fall through the cracks, unfortunately it probably just comes down to profit.
5. The Guardian - Why aren’t YOU celebrating suffering?
This I find disgusting. Leaked documents seem to show that IDS was trying to find a way of making it even more difficult for sick & disabled people to claim benefits. He was also trying to see if he could put in place additional secondary legislation without the need to go through Parliament to give Jobcentres more powers to sanction people.
The article also goes on to explain how the DWP has had its ‘celebration’ week of new tougher sanctions indefinitely suspended.
I find this both alarming & disturbing that they were going to ‘celebrate’ cutting peoples money. I also find it disturbing that he was trying to circumvent Parliament.
It seems that as long as the people that could carry some of the burden don’t, the vulnerable will continue to carry much more of a disproportional share.
So many different benefits & services have been affected. With it being falsely implied that something is the majority, like most claimants are content languishing on benefits & that they get payed exorbitant amounts of money, whereas instead its a very small minority.
I just wish more than anything else that people wouldn’t read or watch something & take it on face value. The spread of inaccurate figures & facts just breeds ignorance.
I have seen & heard so many discussions & comments that include “I know someone who knows someone thats a cheat” or ” There’s someone in my street that’s perfectly capable of working” & this frustrates the disabled community immensely.
Because more often than not they don’t, often it is a misunderstanding or lack of understanding of the individuals disability or entitlement. You don’t know what goes on when they step through their door, taking painkillers, resting, vomiting & such.
It also doesn’t help with the propaganda fed by certain areas of society making people believe that benefits are too high, whereas in fact wages are too low.
Just remember, to get the complete picture you must read as much as you can from as many sources as you can. Once you block your mind to the possibility that you are wrong, you will never learn anything new.
And to finish this post (thank god conferences aren’t every week, this took many breaks & many days) the Conservatives have been doing a #sharethefacts about how their existing policies have been & their new polices will help people but through out the conference, the only #sharethefact tag i could find appropriate to sum up the conference was this……….
Monday, 30 September 2013
14# Weekend Cute, Humour & Awesome.
I hereby call this meeting to order of the 10th annual grand bunny council.
First item on the agenda how is the progress on world domination?
(I do not own the images but respect the awesome)
Sunday, 22 September 2013
13# Weekend Cute, Humour & Awesome.
Got your nose :)
(I do not own the images but respect the awesome)
Tuesday, 17 September 2013
Cute "Animal Knee high Socks"
I’ve always liked unusual, unique & geeky fashion. I saw these socks on Next’s website & just thought how awesome they were. I found I pretty much live in long socks especially in the colder months, knee high socks are a god send.
I’ve found they are especially critical for me having arthritis as my joint pain does increase especially in harsh weather & i’ve had times where i’ve been violently shaking because I was ‘THAT’ cold so anything that lessens that even a bit is appreciated.
I always find it nice when I am able to find colourful socks especially as long socks can be often in boring colours. They are priced at £6, the quality seems fairly good however there are some untidy threads on the inside that can cause problems occasionally. I will let you know if any issues arise.
Saturday, 14 September 2013
12# Weekend Cute, Humour & Awesome.
A cute effective pocket protector :)
(I do not own the images but respect the awesome)
Sunday, 8 September 2013
11# Weekend Cute, Humour & Awesome.
(I do not own the images but respect the awesome)
Saturday, 7 September 2013
My wonky ‘OS’, hospitals & randomness!
So I haven’t done any posts recently, mostly because my uncooperative
“OS” has been malfunctioning as it does, making the most simple of
tasks less straight forward as anyone with a disability can relate to.
This has included but not exclusively, inflammation in my shoulder with my wrist & hip slipping out of its socket plus tendinitis in my foot.
Also I’ve had “trochanteric bursitis” which I have to say I had never heard of but again it’s more inflammation, this time in the hip joint. I’ve been having pain running down my tight bone & was beginning to think it must be my head until my rheumatology nurse said otherwise.
I think that after years of having to cope with my previous rheumatology team that instead of helping you, made you feel continuously guilty & that you must have some how caused your immune system to ‘malfunction’ & so there for you should feel guilty about your arthritis.
I can’t remember how many times I had come out of an appointment crying, feeling utter despair & how many times I had felt that because of what they had said implying the pain must be in my head & no one wants pain, so why wouldn’t it just go? I had reached the point that I would rather grimace in pain than go back into that room.
So I went to my GP because I knew deep down that what they had been telling me was not true & that I wasn’t getting the treatment I needed. He was angry & asked for a second opinion at a neighbouring hospital. I went and she was NICE, so nice & kind & agreed I wasn’t getting the treatment I needed. She asked me did I want her to write to my consultant or did I want to move? I ripped her hand off, I wasn’t going to go back to that hospital.
It’s not perfect, my new hospital but I think a nice touch is them not laughing at me & although even with the new treatment I’m on Isn’t fully managing my arthritis as I still have inflammation & joint damage its still more effective than what I was on which shows how important getting treatment is.
Also I some how managed to dislocate my little finger with nothing more than the slightest of pressure. Thankfully I managed to pull it back into place which my GP agreed was the most sensible thing to do & to do the same if it happened again, which although i’ve had some close calls thankfully it hasn’t as of yet.
And I think that the sad thing is that when he believed me without question that it was so nice. Not because I was hurt but in the past when i’ve told doctors something happened including my old rheumatologist it wasn’t uncommon not to be believed. Which I find insane & through them not believing me I feel like a fraud but also suffered from not getting the treatment I needed.
The thing is although my treatment has improved since leaving the other hospital my treatment is still lacking in areas. NHS resources are badly stretched & this vital service seems to be struggling. One of the other rheumatologists in the team has left, which has meant that my rheumatologist is taking on more patients even though they are deeply stretched as it is. There seems to be a pattern in the NHS when people aren’t “let go” the staff instead aren’t being replaced when they leave which I hope isn’t going to be the case.
So will patients suffer? undoubtedly yes in my opinion because as much as my rheumatologist is great even she doesn’t have enough time to make certain that I get the correct level of monitoring, that any non standard tests are issued & that issues are investigated deeper.
They are trying their best to keep everyone’s head above water reacting more to people in the more extremes of their illness than having the ability to keep people stable or to improve difficult cases further.
Don’t get me wrong, I am extremely grateful for the NHS even when the service is patchy as I know there are people left without even basic health care in certain parts of the world. However we should strive for better whether a condition can be stabilised or not. People should have as much health care as they need to improve their quality of life in what ever way possible, however small.
I have experienced the best & worst of the system. As I’ve mentioned my last rheumatology team was abysmal, where as my new Physiotherapist is awesome & is as ‘special’ as me. She really wants to help anyway she can & so seems to have invented a ‘pick a mix’ method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….
……………But no promises ;)
This has included but not exclusively, inflammation in my shoulder with my wrist & hip slipping out of its socket plus tendinitis in my foot.
Also I’ve had “trochanteric bursitis” which I have to say I had never heard of but again it’s more inflammation, this time in the hip joint. I’ve been having pain running down my tight bone & was beginning to think it must be my head until my rheumatology nurse said otherwise.
I think that after years of having to cope with my previous rheumatology team that instead of helping you, made you feel continuously guilty & that you must have some how caused your immune system to ‘malfunction’ & so there for you should feel guilty about your arthritis.
I can’t remember how many times I had come out of an appointment crying, feeling utter despair & how many times I had felt that because of what they had said implying the pain must be in my head & no one wants pain, so why wouldn’t it just go? I had reached the point that I would rather grimace in pain than go back into that room.
So I went to my GP because I knew deep down that what they had been telling me was not true & that I wasn’t getting the treatment I needed. He was angry & asked for a second opinion at a neighbouring hospital. I went and she was NICE, so nice & kind & agreed I wasn’t getting the treatment I needed. She asked me did I want her to write to my consultant or did I want to move? I ripped her hand off, I wasn’t going to go back to that hospital.
It’s not perfect, my new hospital but I think a nice touch is them not laughing at me & although even with the new treatment I’m on Isn’t fully managing my arthritis as I still have inflammation & joint damage its still more effective than what I was on which shows how important getting treatment is.
Also I some how managed to dislocate my little finger with nothing more than the slightest of pressure. Thankfully I managed to pull it back into place which my GP agreed was the most sensible thing to do & to do the same if it happened again, which although i’ve had some close calls thankfully it hasn’t as of yet.
And I think that the sad thing is that when he believed me without question that it was so nice. Not because I was hurt but in the past when i’ve told doctors something happened including my old rheumatologist it wasn’t uncommon not to be believed. Which I find insane & through them not believing me I feel like a fraud but also suffered from not getting the treatment I needed.
The thing is although my treatment has improved since leaving the other hospital my treatment is still lacking in areas. NHS resources are badly stretched & this vital service seems to be struggling. One of the other rheumatologists in the team has left, which has meant that my rheumatologist is taking on more patients even though they are deeply stretched as it is. There seems to be a pattern in the NHS when people aren’t “let go” the staff instead aren’t being replaced when they leave which I hope isn’t going to be the case.
So will patients suffer? undoubtedly yes in my opinion because as much as my rheumatologist is great even she doesn’t have enough time to make certain that I get the correct level of monitoring, that any non standard tests are issued & that issues are investigated deeper.
They are trying their best to keep everyone’s head above water reacting more to people in the more extremes of their illness than having the ability to keep people stable or to improve difficult cases further.
Don’t get me wrong, I am extremely grateful for the NHS even when the service is patchy as I know there are people left without even basic health care in certain parts of the world. However we should strive for better whether a condition can be stabilised or not. People should have as much health care as they need to improve their quality of life in what ever way possible, however small.
I have experienced the best & worst of the system. As I’ve mentioned my last rheumatology team was abysmal, where as my new Physiotherapist is awesome & is as ‘special’ as me. She really wants to help anyway she can & so seems to have invented a ‘pick a mix’ method to treatment.
I apologise for any rambling, this post was written over a few days & a more coherent service should resume shortly………….
……………But no promises ;)
Sunday, 1 September 2013
10# Weekend Cute, Humour & Awesome.
Ah Johnny Depp proving how awesome he is.
(I do not own the images but respect the awesome)
Sunday, 25 August 2013
9# Weekend Cute, Humour & Awesome.
Ah because it’s a cute picture :) Have a nice Monday !
(I do not own the images but respect the awesome)
Friday, 16 August 2013
8# Weekend Cute, Humour & Awesome.
Just love Jennifer Lawerance she is just an awesome role model for young girls & I dig her crazy
(I do not own the images but respect the awesome)
Sunday, 11 August 2013
7# Weekend Cute, Humour & Awesome.
Just because this makes my brain smile through a cuteness overload.
(I do not own the images but respect the awesome)
Sunday, 4 August 2013
6# Weekend Cute, Humour & Awesome.
Just because this is how my head thinks :)
(I do not own the images but respect the awesome)
Sunday, 28 July 2013
#5 Weekend Cute, Humour & Awesome.
(I do not own the images but respect the awesome)
Sunday, 21 July 2013
#4 Weekend Cute, Humour, Awesome.
#4 Weekend Cute, Humour, Awesome.
I don’t own this but it is awesome :)
Friday, 19 July 2013
Its all about perspective.
(Here is a picture of my beautiful long furred baby Syrian tucking into some cucumber to cool down)
It has been hot this week & today is no exception & it is indicative of us brits to whine when its hot & to whine when its cold.
But lets take some perspective here, I’m really hot & I could wine but it wont make me any cooler & I have two beautiful long furred Syrians & the baby of the two’s fur is like silk & wool. Now we have been keeping them both cool but especially today the baby has had his moments when I’ve found him either lying ‘splat’ on his front or on his back with all his feet in the air. I would be lying if i said he hasn’t whined (he really can for a hamster) but I cool him down again & he gets on with it & snuggles down to fall asleep.
Now the difference is I could think of only of me & whine about how hot it is but I have the ability to strip off to my birthday suit if I so wished (with the blinds down not to scare the neighbours of course lol) whereas my beautiful little hamster doesn’t have such an option.
This is my point. Its ok to whine as long as afterwards we put it into perspective & carry on with what we are dealt because any whining is only going to increase our own suffering. I understand that this is not always possible & especially for people with disabilities because the light at the end of the tunnel may seem so dim & we all have times like this. But for all the benefit bashers out there I can not understand for one minute why you can not be grateful for your lot? why people make stupid suggestions like people should only have food stamps & such? Why can’t you be grateful for your health & what ever you do have because putting other people down wont make you a ‘cooler hamster’
And
To you all " Just keep swimming"
I dedicate this post to a beautiful soul who after battling with cancer earned her wings, Talia Castellano.
Sunday, 14 July 2013
#3 Weekend Cute, Humour, Awesome
I don’t own this awesome but this is a salute to the logic of Sheldon Cooper. Sums up how I’ve felt this week lol
Tuesday, 9 July 2013
"So whats a cumulative impact assessment"
So today has been one of those interesting days & I wasn’t going to do another post but found myself compelled to.
So i’m doing this post at the moment with two of my fingers strapped up because my hand decided it reaaaallllyyy wanted to know what a dislocated finger felt like so my finger happily obliged >.<
Ah hypermobility!
But the thing is I can only do the things I do because of a lot of physical help, adaptions & aids etc & there is always a physical “price" for everything I do. Disability is a major barrier.
The government have pushed through a vast array of cuts in the light of austerity but to begin with they insisted that the most vulnerable would be protected.
If we fast forward to today there are no promises of protection because they know that it is not being given & with each cut it slices into the safety net making the holes bigger, meaning more & more of the most vulnerable falling through the net. You only need look at the news, to see countless examples of people that were let down & for every one story covered there are many more in the wings.
So tomorrow there is a debate in the house of commons calling for a ‘cumulative impact assessment’ with the aim to try and assess the overall impact of the cuts. Because many people are experiencing several cuts to services all at once instead of just one or two which people could try & adapt to & this is leading people into significant difficulty & hardship.
Many people, news outlets & charities are now seeing the scope of these cuts & how multiple cuts are causing significant problems to vulnerable people & now they want to get the government to see the reality.
Below is a link to a awesome blog that goes into much more detail than I can atm with my wonky finger
Diary of a Benefit Scrounger
So i’m doing this post at the moment with two of my fingers strapped up because my hand decided it reaaaallllyyy wanted to know what a dislocated finger felt like so my finger happily obliged >.<
Ah hypermobility!
But the thing is I can only do the things I do because of a lot of physical help, adaptions & aids etc & there is always a physical “price" for everything I do. Disability is a major barrier.
The government have pushed through a vast array of cuts in the light of austerity but to begin with they insisted that the most vulnerable would be protected.
If we fast forward to today there are no promises of protection because they know that it is not being given & with each cut it slices into the safety net making the holes bigger, meaning more & more of the most vulnerable falling through the net. You only need look at the news, to see countless examples of people that were let down & for every one story covered there are many more in the wings.
So tomorrow there is a debate in the house of commons calling for a ‘cumulative impact assessment’ with the aim to try and assess the overall impact of the cuts. Because many people are experiencing several cuts to services all at once instead of just one or two which people could try & adapt to & this is leading people into significant difficulty & hardship.
Many people, news outlets & charities are now seeing the scope of these cuts & how multiple cuts are causing significant problems to vulnerable people & now they want to get the government to see the reality.
Below is a link to a awesome blog that goes into much more detail than I can atm with my wonky finger
Diary of a Benefit Scrounger
Whats in the brown envelope?
So what’s the significance of a little brown envelope ?
Not much really, it more concerns the contents within it. This little brown envelope can bring either security or throw you down into the depths of uncertainty & fear.
Also talking to others, they have experienced the same feeling & some were left feeling petrified of the day that this little brown envelope will land on the mat & what news it might bring.
Of course I am talking about benefits & the question that many a spoonie ask “have they assessed me fairly & correctly this time".
You see I had a reassessment.
So they sent me a dissertation of a form to fill out, which with a lot of time, effort & support took me over two months to complete. There are countless questions to answer on these types of forms & I even had to use separate sheets of paper to answer some of them.
So I sent it off & waited for the enviable, that I would have to battle this, that this would just mean even more form filling & such, which just thinking about makes me feel tired & sore.
But the envelope landed on the mat & I was awarded (makes it sound like I won Wimbledon, whoop! whoop!) my benefit. Well, they do send out certificates (for a free tax disc :P) which I find very odd.
It did come as a shock that they got it right, because every single time with this benefit they have refused me first time around. When I’ve challenged these refusals I have found out that they have used inaccurate or incorrect information & I have always been awarded on a reconsideration.
And I think that’s it.
Disabled people understand the need for checks to make sure that the people are getting this support are entitled even with the fraud rate being so low.
But the thing I think makes it hard is that the amount of people that get awarded on a reconsideration or appeal. This shows that there are significant errors & this means that people that often have a great deal on their plate (hence applying) having to fight for their entitlement. This can cause a great deal of fear & uncertainty especially to those struggling with mental illness & I think that this is a big problem. I have read my own refusal letters & the accompanying information & the letter read like its someone else they’re talking about & the information is either incomplete or out of date.
And I know I’m not alone in this & it shouldn’t be down to luck, are you going to have a decision maker that reads your form properly or skip over it? Because if you have two people with nearly identical conditions, one can be refused and the other one granted which makes it seem like a lottery.
I’m obviously glad that I had my benefit renewed without issue, with the way my health is I’m grateful not to have that added stress.
But how I wish these letters would change into my acceptance letter to Hogwarts because that would be AWESOME!
Not much really, it more concerns the contents within it. This little brown envelope can bring either security or throw you down into the depths of uncertainty & fear.
Also talking to others, they have experienced the same feeling & some were left feeling petrified of the day that this little brown envelope will land on the mat & what news it might bring.
Of course I am talking about benefits & the question that many a spoonie ask “have they assessed me fairly & correctly this time".
You see I had a reassessment.
So they sent me a dissertation of a form to fill out, which with a lot of time, effort & support took me over two months to complete. There are countless questions to answer on these types of forms & I even had to use separate sheets of paper to answer some of them.
So I sent it off & waited for the enviable, that I would have to battle this, that this would just mean even more form filling & such, which just thinking about makes me feel tired & sore.
But the envelope landed on the mat & I was awarded (makes it sound like I won Wimbledon, whoop! whoop!) my benefit. Well, they do send out certificates (for a free tax disc :P) which I find very odd.
It did come as a shock that they got it right, because every single time with this benefit they have refused me first time around. When I’ve challenged these refusals I have found out that they have used inaccurate or incorrect information & I have always been awarded on a reconsideration.
And I think that’s it.
Disabled people understand the need for checks to make sure that the people are getting this support are entitled even with the fraud rate being so low.
But the thing I think makes it hard is that the amount of people that get awarded on a reconsideration or appeal. This shows that there are significant errors & this means that people that often have a great deal on their plate (hence applying) having to fight for their entitlement. This can cause a great deal of fear & uncertainty especially to those struggling with mental illness & I think that this is a big problem. I have read my own refusal letters & the accompanying information & the letter read like its someone else they’re talking about & the information is either incomplete or out of date.
And I know I’m not alone in this & it shouldn’t be down to luck, are you going to have a decision maker that reads your form properly or skip over it? Because if you have two people with nearly identical conditions, one can be refused and the other one granted which makes it seem like a lottery.
I’m obviously glad that I had my benefit renewed without issue, with the way my health is I’m grateful not to have that added stress.
But how I wish these letters would change into my acceptance letter to Hogwarts because that would be AWESOME!
Sunday, 7 July 2013
It's near Monday, Gwah!
I’m so mean reminding you but you know it is the enviable >.<
So the weather has been quiet hot here this weekend & among other things I have been trying to keep our two cute fluffy syrians as cool as possible, bless them.
This week, one of the hospital appointments I had was to see my physio who is super lovely but I think is really confused about what to do with me as I have random joint swelling that doesn’t seem to conform to any patten & the swelling usually gets exacerbated by normal physio ‘things’. I’m currently waiting for some final tests that may explain why this swelling seems to be random but for now she really seems to not know what to do with me.
I get the feeling that she really doesn’t think there is anything further she could do to help without aggravating things which almost always seems to happen when I try any physio related stuff but she seemed determined to try & seems like she doesn’t want to let me down which I appreciate.
So I’m going to be trying acupuncture again & I may be seeing a podiatrist to possibly get some insoles.
Also as people may know I started Questran for my Bile reflux & I hate it, it’s just been awful.
Ok yes the suspension is nasty to take but its not the worst but the thing that’s been quiet bad is that it has increased my nausea & the amount of bile coming up. But the worst thing is the bloating, OMG! I swear I feel like I have a beer belly & to be honest this is the one that is driving me crazy. The doctor wants me to ideally take four doses but i’m only managing two at best because of the bloating & such. I think this week i’m going to have to go back to the doctor to see what can be done.
In other news I had my benefit reviewed & it was renewed so there’s one less worry there.
And really that’s it for now, I would love to write more but writing as much as I did & re reading through it just showed the amount of Bol**cks I was writing due to the pain & how i’m feeling atm & no its not because IM CRAZY! >.< Ha Ha
Anyway new posts coming soon so stay tuned!
So the weather has been quiet hot here this weekend & among other things I have been trying to keep our two cute fluffy syrians as cool as possible, bless them.
This week, one of the hospital appointments I had was to see my physio who is super lovely but I think is really confused about what to do with me as I have random joint swelling that doesn’t seem to conform to any patten & the swelling usually gets exacerbated by normal physio ‘things’. I’m currently waiting for some final tests that may explain why this swelling seems to be random but for now she really seems to not know what to do with me.
I get the feeling that she really doesn’t think there is anything further she could do to help without aggravating things which almost always seems to happen when I try any physio related stuff but she seemed determined to try & seems like she doesn’t want to let me down which I appreciate.
So I’m going to be trying acupuncture again & I may be seeing a podiatrist to possibly get some insoles.
Also as people may know I started Questran for my Bile reflux & I hate it, it’s just been awful.
Ok yes the suspension is nasty to take but its not the worst but the thing that’s been quiet bad is that it has increased my nausea & the amount of bile coming up. But the worst thing is the bloating, OMG! I swear I feel like I have a beer belly & to be honest this is the one that is driving me crazy. The doctor wants me to ideally take four doses but i’m only managing two at best because of the bloating & such. I think this week i’m going to have to go back to the doctor to see what can be done.
In other news I had my benefit reviewed & it was renewed so there’s one less worry there.
And really that’s it for now, I would love to write more but writing as much as I did & re reading through it just showed the amount of Bol**cks I was writing due to the pain & how i’m feeling atm & no its not because IM CRAZY! >.< Ha Ha
Anyway new posts coming soon so stay tuned!
Saturday, 6 July 2013
Something new!
So a quick post to let people know that there’s something new!
I use various things to help me complete my posts & they take time to complete due to my disability obviously but with the power of the interwebs & ifttt which is an awesome service it has allowed me to route my posts through to blogger automatically.
I know that people aren’t all on one service & this may allow people that might want to see this blog to do so on a service that they’re more familiar with.
I also have set up a Google+ but at the moment ifttt doesn’t support this so updates maybe a little sparse at the present time.
To readers on blogger, originally my blog was set up on tumblr & from the first post on blogger entitled ‘#2 Weekend cuteness’, anything I post on my tumblr will appear there too.
But if you do want to read any of my old posts there are 47 over on tumblr, these wont be moved over but any future post will.
I hope this helps people :)
Edit: Please excuse any teething problems :)
I use various things to help me complete my posts & they take time to complete due to my disability obviously but with the power of the interwebs & ifttt which is an awesome service it has allowed me to route my posts through to blogger automatically.
I know that people aren’t all on one service & this may allow people that might want to see this blog to do so on a service that they’re more familiar with.
I also have set up a Google+ but at the moment ifttt doesn’t support this so updates maybe a little sparse at the present time.
To readers on blogger, originally my blog was set up on tumblr & from the first post on blogger entitled ‘#2 Weekend cuteness’, anything I post on my tumblr will appear there too.
But if you do want to read any of my old posts there are 47 over on tumblr, these wont be moved over but any future post will.
I hope this helps people :)
Edit: Please excuse any teething problems :)
Friday, 5 July 2013
#2 Weekend cuteness!! This time provided by my own hamster
#2 Weekend cuteness!! This time provided by my own hamster
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