As some of you may be aware, the benefit DLA is shortly changing to PIP which means that I am shortly expecting not to be able to claim benefits anymore, leaving me without a car and therefore worrying about how I will work and be able to pay the bills.
With the above in mind, imagine the distress, of myself and many other people who are trying to live an honest and "normal" life, caused when the daily mail published a very biased (against people with disabilities) article informing people how much money we cost the tax payer, and how the government will change this "for the better"!
The reason I find the article so damn disgusting is that I work, and therefore I pay tax and national insurance, meaning that in theory, I pay for myself!
The other part of it, is that I am fortunate that I am still able to work, despite needing help to walk, wash, do my hair, open Christmas presents etc. I can work on a computer, and do so 4 days a week. I guess the daily mail think I should work through the pain another day a week, making it full time, but am I not entitled to give myself a break and wear comforting clothes, not hurt my hip by doing too much, and have myself a much needed 3 day rest to get myself ready for the week ahead? I think I am!
And the worst of it? Hasn't come yet.
There are approaching 400 comments on this article... And they are showing that the UK houses some of the most shallow minded, selfish, ungrateful people in the world. And it's Christmas, so I dread to think what they would be like on a normal day of the year.
One person suggests that we need a mark on the cars we receive to specify that it is a motability car. 3 answers to this. 1) where the hell is the dignity in that?!? 2) What, are we back in WW2, where people had to mark themselves with the Star of David to specify that they were unworthy of society, and 3) what is a disabled badge? Is this not a mark on the car to specify that we need support and help? Obviously not.
One thing that is evident is that people have not done the research on DLA in order to know that we are not scroungers. We are allowed to work with the DLA and I do so proudly and to keep myself sane.
Sorry if someone thinks I am going on, or going of far, but I have been rattled. I deserve to live, as do every other disabled person in the world.
I hope everyone had a great Christmas and have a prosperous new year.
Love to you all xx
Thursday, 27 December 2012
Sunday, 16 December 2012
Neurologist Old and New
My busy schedule of hospital appointments is finished for the year. I get 3 weeks off, with my next appointment being on the second of January. This means that I get to work normal hours for my last week at work before Christmas, and fully enjoy my Christmas Break. In the meantime, here's the low down of the last few appointments....
Physio
My physio seems happy with the "progress" of my hand.
Although I am happy with the passive range of my hand, try as I might, I cannot put the range into use by actively using my hand. I'm half thinking that this is a miracle that just isn't going to happen. I see my physio again on the 7th January, for her to "review" me. The thought that keeps bugging me, is that I know that my hand will never be "fully usable"... And I think the physio thinks this is the best its going to get, which, as I can't use my hand in most things, is completely useless to me...
Hip Specialist
The quickest, most pointless appointment I have ever had with this man I class as a genius.
This man was the first person to give me an x-ray, and therefore gave me the correct diagnosis of Hip Dysplasia for the first time. He then went out to fix it, which initially, he did.
The reason this was the worst hospital appointment I've had in years, you wonder? I was in and out within 10 minutes (that's from parking up, to waiting, to going in, and getting back out again), nothing was seen that they didn't expect in the MRI scan, there's nothing structurally wrong with my hip, and so there's nothing wrong and I have to accept the pain that I am feeling....
Erm, how about, Mr Specialist, whom I am disappointed with, I stick a knife in your hip for about 18 hours in a day, and see how long you can accept this for?!? Anyway, to add insult to injury, he doesn't want to see me for another year... and no treatment is needed for at least 20 years, where a hip replacement may be necessary...
So to conclude this part of my blog, I must accept my pain for around about 20 years... Impossible.
Neurologist
Now, this appointment gets the title of my blog, and soon will become clear.
I went into the appointment feeling deflated, and due to the previous specialist appointment, as if, once again, I was about to be made to look like a hypochondriac who was looking for things to be wrong with my body in order to get them fixed (the feeling I had from the last appointment).
How wrong I was...
There is a reason I can't use my hand, which is because the signals from my brain do not take the normal route to tell my hand to move, and so it is slow and laboured (his words). Due to this, it means my muscles have stiffened, making it, and cue the analogy, like trying to get through a mile full of thorns to get the signal to my hand. Therefore, cue the solution(!) botox is needed to relax the muscles in my hand, to get rid of the thorns and try and build strength, both in my hand, and in the signals.
Now, I am ever so slightly nervous about botox. I have had this before, and it made my fingers "stick" meaning i could not use them at all, and all use was severed. However, the specialist has assured me that they will try it in a different muscle, and so this hopefully won't happen.
Also, I learnt, cue the "screw you" to my hip specialist, there is a link between pain in another part of the body and stiffness/spasticity in my hand. I spoke to my Neurologist about my hip pain, and he confirmed that this won't be helping matters. He suggested it may be to do with spasms in my hip muscles (I didn't even know that was possible) and so the solution (yay!!) could be a drug called Baclofen, which is a tablet muscle relaxant. There are a few side effects that could occur, but as the saying goes "you never know unless you try".
So all being well, there are a few solutions to try, and I am so very willing to give them a chance to work.
The reason for the cryptic title?
I saw the very same neurologist 6 years ago, and at the time, he stated there was nothing wrong with me!
So there you have it, my rollercoaster that has been the last 2 weeks is over... I hope you enjoyed the ride.
Merry Christmas and a Happy New Year to all, I hope it brings you joy and presents.
Much love xx
Physio
My physio seems happy with the "progress" of my hand.
Although I am happy with the passive range of my hand, try as I might, I cannot put the range into use by actively using my hand. I'm half thinking that this is a miracle that just isn't going to happen. I see my physio again on the 7th January, for her to "review" me. The thought that keeps bugging me, is that I know that my hand will never be "fully usable"... And I think the physio thinks this is the best its going to get, which, as I can't use my hand in most things, is completely useless to me...
Hip Specialist
The quickest, most pointless appointment I have ever had with this man I class as a genius.
This man was the first person to give me an x-ray, and therefore gave me the correct diagnosis of Hip Dysplasia for the first time. He then went out to fix it, which initially, he did.
The reason this was the worst hospital appointment I've had in years, you wonder? I was in and out within 10 minutes (that's from parking up, to waiting, to going in, and getting back out again), nothing was seen that they didn't expect in the MRI scan, there's nothing structurally wrong with my hip, and so there's nothing wrong and I have to accept the pain that I am feeling....
Erm, how about, Mr Specialist, whom I am disappointed with, I stick a knife in your hip for about 18 hours in a day, and see how long you can accept this for?!? Anyway, to add insult to injury, he doesn't want to see me for another year... and no treatment is needed for at least 20 years, where a hip replacement may be necessary...
So to conclude this part of my blog, I must accept my pain for around about 20 years... Impossible.
Neurologist
Now, this appointment gets the title of my blog, and soon will become clear.
I went into the appointment feeling deflated, and due to the previous specialist appointment, as if, once again, I was about to be made to look like a hypochondriac who was looking for things to be wrong with my body in order to get them fixed (the feeling I had from the last appointment).
How wrong I was...
There is a reason I can't use my hand, which is because the signals from my brain do not take the normal route to tell my hand to move, and so it is slow and laboured (his words). Due to this, it means my muscles have stiffened, making it, and cue the analogy, like trying to get through a mile full of thorns to get the signal to my hand. Therefore, cue the solution(!) botox is needed to relax the muscles in my hand, to get rid of the thorns and try and build strength, both in my hand, and in the signals.
Now, I am ever so slightly nervous about botox. I have had this before, and it made my fingers "stick" meaning i could not use them at all, and all use was severed. However, the specialist has assured me that they will try it in a different muscle, and so this hopefully won't happen.
Also, I learnt, cue the "screw you" to my hip specialist, there is a link between pain in another part of the body and stiffness/spasticity in my hand. I spoke to my Neurologist about my hip pain, and he confirmed that this won't be helping matters. He suggested it may be to do with spasms in my hip muscles (I didn't even know that was possible) and so the solution (yay!!) could be a drug called Baclofen, which is a tablet muscle relaxant. There are a few side effects that could occur, but as the saying goes "you never know unless you try".
So all being well, there are a few solutions to try, and I am so very willing to give them a chance to work.
The reason for the cryptic title?
I saw the very same neurologist 6 years ago, and at the time, he stated there was nothing wrong with me!
So there you have it, my rollercoaster that has been the last 2 weeks is over... I hope you enjoyed the ride.
Merry Christmas and a Happy New Year to all, I hope it brings you joy and presents.
Much love xx
Tuesday, 4 December 2012
Here Comes the Snow
When I first started writing this blog, I named it "Here Comes the Sun", mostly because at the time I was in a sunny mood and it was also Summer, which mostly meant nice, warm, sun.
Today, I'm twisting it round a bit, as, even though I'm not miserable, and my radiators have been replaced to make my house really cosy, I'm looking out the window and the sleety, snowy, rainy stuff is falling. (There is a point to this blog I promise!)
The reason I thought to write this blog, is because recently I am moaning more about pain in hips, stiffness in hands, annoyances of drop foots, and the fact that its cold hasn't helped all this. I had a lengthy conversation with a few friends over twitter last night, who have disabilities either the same or similar to me (great friends who have been great support to me recently). My favourite way to describe it was said to me this afternoon, by a very inspirational and lovely lady, and goes something like this:
My right side is pretty tin man effect today-if only an oil can'd help?
Now we have all seen The Wizard of Oz, right? We all know that there's an oil can right round the corner to the tin man before he is able to move. Might sound like an inside joke, but don't you think it would be great if there was a tin can with oil in 10 yrds away from me which could make my arm/leg/hip/back/body work :) Wishful thinking I know.
So, carrying on from all of the above, I have a pretty busy 7 days coming up hospital wise.
On Thursday (6th Dec) I am getting the results of my MRI scan. This was after a tad bit of complaining, due to the fact that the original appointment was on the 16th January, which was coming up to 3 months after the MRI scan itself. MRI's aren't the most pleasant experience ever, and so to prolong the agony was a bit harsh, and so the appointment was swiftly brought forward :)
Next, is my Physio appointment, 1 week today, on the 11th December. In the short time I have been having physio, I have grown to fully respect the woman trying to help, and the range of my hand is amazing once she's worked her magic. The only problem... It only lasts at most a day and a half before it tightens back up and has nothing more to do with me other than to complain bitterly at me that I've pushed it too hard. The other thing the physio has done is to provide me a splint for my drop foot. Whilst it fixes the drop foot, I have been getting more pain in my hip, and so need to talk to her, in case my muscles there need strengthening too.
To round up next week, I have an appointment with a neurologist.... All I can say to this is... "What do I Expect???" If anyone knows, lemme know!
So, that wraps up my "Here Comes the Snow" post, dedicated to the snow :)
Now hands up whose looking forward to Christmas!?
:)
Today, I'm twisting it round a bit, as, even though I'm not miserable, and my radiators have been replaced to make my house really cosy, I'm looking out the window and the sleety, snowy, rainy stuff is falling. (There is a point to this blog I promise!)
The reason I thought to write this blog, is because recently I am moaning more about pain in hips, stiffness in hands, annoyances of drop foots, and the fact that its cold hasn't helped all this. I had a lengthy conversation with a few friends over twitter last night, who have disabilities either the same or similar to me (great friends who have been great support to me recently). My favourite way to describe it was said to me this afternoon, by a very inspirational and lovely lady, and goes something like this:
My right side is pretty tin man effect today-if only an oil can'd help?
Now we have all seen The Wizard of Oz, right? We all know that there's an oil can right round the corner to the tin man before he is able to move. Might sound like an inside joke, but don't you think it would be great if there was a tin can with oil in 10 yrds away from me which could make my arm/leg/hip/back/body work :) Wishful thinking I know.
So, carrying on from all of the above, I have a pretty busy 7 days coming up hospital wise.
On Thursday (6th Dec) I am getting the results of my MRI scan. This was after a tad bit of complaining, due to the fact that the original appointment was on the 16th January, which was coming up to 3 months after the MRI scan itself. MRI's aren't the most pleasant experience ever, and so to prolong the agony was a bit harsh, and so the appointment was swiftly brought forward :)
Next, is my Physio appointment, 1 week today, on the 11th December. In the short time I have been having physio, I have grown to fully respect the woman trying to help, and the range of my hand is amazing once she's worked her magic. The only problem... It only lasts at most a day and a half before it tightens back up and has nothing more to do with me other than to complain bitterly at me that I've pushed it too hard. The other thing the physio has done is to provide me a splint for my drop foot. Whilst it fixes the drop foot, I have been getting more pain in my hip, and so need to talk to her, in case my muscles there need strengthening too.
To round up next week, I have an appointment with a neurologist.... All I can say to this is... "What do I Expect???" If anyone knows, lemme know!
So, that wraps up my "Here Comes the Snow" post, dedicated to the snow :)
Now hands up whose looking forward to Christmas!?
:)
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