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So I’ll start a revolution from my bed

21 Jul

There is absolutely no point in forcing yourself to write a personal blog if you have more important things to worry about, and those worries have been the reason behind the long absence between posts. I have missed this blog dearly; although I knew it was helping me I didn’t realise quite how much until writer’s block hit and life got somewhat in the way. That’s not to say I haven’t had time – I’ve had plenty, more than I can begin to visualise – but that time has been taken up with difficult sleeping habits, medicine regimes, appointments, depression… I’ve experienced the full range of, well, everything recently.

Seronegative symmetrical psoriatic arthritis. Somehow, even the name sounds complicated.

Throughout the past couple of years I’ve often wondered how I would feel if it did all turn out to be real. For even though I’ve had very clear physical symptoms and (eventually) positive X-rays and an MRI, there has always been a small voice in my head saying, “but you lie. You always lie”. All the doctors who wouldn’t listen and the people who suggested it may just be overreaction on my  part… they were wrong, and I was right. It’s a strange feeling for somebody who isn’t used to being right.

 

wta3

Now feels like the right time to begin writing again. A month after my diagnosis, and I’m just about beginning to pull things together. There’s a lot to concentrate on – I’ve been put back on steroids (Prednisolone, this time) and have also been put on a course of Methotrexate, along with Fentanyl patches (which refuse to stick in this heatwave but otherwise they’ve been fantastic at dealing with the ankle pain) and codeine still if I need it. I have varying specialists dealing with my case, a nurse, and am also attending a pain clinic for physiotherapy, counselling and relaxation, as well as any medications/pain relief if needed. Everybody has been lovely, from the rheumatologist who diagnosed me to the occupational therapist I saw on Friday morning. The difference from simply changing hospitals has been enormous, and I’m so thankful to my GP for understanding why I no longer had any faith in our hospital. The time from first seeing the new rheumatology team to diagnosis was two months. My local hospital achieved nothing except further damage in over two whole years, all because they never scanned me.

I haven’t quite accepted the diagnosis yet; I suspect it’ll take while. Although I knew something was wrong and even though I considered inflammatory arthritis as a possibility for a long time, nothing quite feels real yet. However, I don’t feel the sense of hopelessness which has dogged me for months and months; a weight has definitely lifted, even if newer weights have been added at the same time.

I am trying not to look at the past year as a waste, but I must confess to feeling resentful; I spent a year unable to walk without extreme pain – and, over recent months, have been unable to walk at all and have spent my days indoors relying on crutches to get to the toilet) – and I do feel cheated. All it would have taken was an MRI. All they had to do was listen to my history. They didn’t though, and as a consequence I have lost a year of my life to pain.

It’s hard to know where to start rebuilding.

 

building-a-wall

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22 Comments

Posted by on July 21, 2013 in Every day life

 

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22 responses to “So I’ll start a revolution from my bed

  1. jatwood4

    July 21, 2013 at 4:10 am

    I only have a minute now, but I will be back with more tomorrow sometime. I hate to say this about such a nasty sounding diagnosis, but I am thrilled that they finally got off their butts — doctors, that is — and figured this out. I always believed you, even if you didn’t believe in yourself. I am so happy to hear you have Fentanyl patches — they work, for sure! More soon — I’m happy to see you in my email inbox again!

     
  2. Julie

    July 21, 2013 at 8:20 am

    *hugs* I’m so, so, so glad to read this. Not the part about how bad it got, but that you’re finally getting real help, that there’s hope.

    My advice about the last year is to realize you can’t change it. You can only move forward, so do that. I’m not saying forget what happened, but don’t let regret or bitterness taint the future.

    *more hugs* :)

     
    • halfwaybetweenT

      August 24, 2013 at 2:48 am

      Thank you dear; you’re right – although it’s quite difficult at the moment to see myself moving forward. Things are slowly improving, but it’s a long process. As for bitterness… well, I’ll see ;) However, I don’t have any regret, as it’s brought me much closer to certain friends and family.

      *massive hugs*

       
      • Julie

        August 24, 2013 at 2:50 am

        *HUUUUGS* Momentum always starts slow. It’ll build. I’m sure of it. :) Glad to hear things are improving though. I’ve missed you and you’ve often been in my thoughts.

         
  3. faithhopechocolate

    July 21, 2013 at 8:57 am

    Welcome back to blogland! A proper diagnosis of something that it is possible to treat is more or less what I’ve been praying for for you, and I’m so, so glad that you stuck it out and insisted and have got that.
    Love & hugs
    Faith x

     
    • halfwaybetweenT

      August 24, 2013 at 2:49 am

      Thank you so much – for everything. You’ve been wonderfully supportive, and I really do appreciate it. It doesn’t look like I’ll be coming for a retreat any time soon, but one day ;)

      Love and hugs right back x

       
      • faithhopechocolate

        August 27, 2013 at 8:24 pm

        Hey, there’s no rush. Just as and when you’ve got the energy and the strength. The Order isn’t planning on going anywhere any time soon. Xxx

         
        • halfwaybetweenT

          August 29, 2013 at 4:51 am

          That’s very true – thank you. I’m aiming to get to the Isle of Man again one day to show S Port Erin, so if I can do that, I can com on retreat. Perhaps one day I’ll get to see you in person x

           
          • faithhopechocolate

            August 29, 2013 at 5:07 pm

            Don’t try to do everything all at once though! One day at a time. Xx

             
  4. modifiedgirl

    July 21, 2013 at 9:36 am

    I’ve worn the fentanyl patches for almost two years now, I thought I would pass along a few tips on getting them to stay on in this dreaded heat. Before you apply a new one, wipe down the whole area with alcohol first-it clears away and sneaky sweat or oils that might be hiding there for you to reject the patch. Another lifesaver:Tegaderm! It’s the clear film-like tape they use directly over IV’s. you can buy it at the hospital pharmacy-just ask the pharmacist for it. I put a piece over every new patch and never have an issue. I swim, shower,sit in the hot tub with it, no problems at all! Hope this helps out and be as well as you can, soon!

     
    • halfwaybetweenT

      August 29, 2013 at 4:53 am

      Thank you so much for the advice – unfortunately by the time I read it, I’d been taken off the patches! I did get some tegaderm though from a friend who works in care, and it worked wonderfully. How have you found them? I thought they were brilliant when they stuck – more effective than the SR morphine they’ve got me on now.

       
  5. Hawkruh

    July 21, 2013 at 9:45 am

    With a diagnosis, you can now develop a plan. I’m sorry for all your pain but hope things can get better now.

     
    • halfwaybetweenT

      August 29, 2013 at 4:53 am

      Thank you – a plan is being slowly developed. It’s a strange feeling to finally know.

       
  6. Shandra

    July 21, 2013 at 10:30 am

    There is Hope. :) Shandra

     
  7. bandgeekbella

    July 21, 2013 at 7:23 pm

    You have written this beauty and strength, kudos to you. Keep your inner self strong and it’ll keep your outer self stronger. Take care!

     
  8. jatwood4

    July 22, 2013 at 1:29 am

    All kinds of joyful love from Maine. I don’t have the pain that you do, but I do have a whole raft of doctors who don’t believe me, in spite of photographic evidence and evidence visible on my skin. Every little while, I get really discouraged and sad that my doctors believe me to be psychotic. But I am ignoring them as much as possible. I am thrilled you have found a doctor and a hospital, both of whom/which listen to you. I’m so glad you’re back 8-)

     
  9. Frances

    July 27, 2013 at 8:30 pm

    I am so glad they finally diagnosed you. I’m a nurse and have followed your progress forming my own diagnosis and it does match. I am also aware of how people want a diagnosis but then feel like they’ve taken a bullet when they get it. It’s human nature and all your feelings are completely valid. I know your struggle through the NHA has been difficult but as an American, I have to say how lucky you are to at least have a struggle/fight to engage in. Had the same thing happened to you in America, you would be on your own. If you don’t have money here, you have no health care. And it sucks that it’s so hard in England, but it could be worse, you could be in Mississippi.

     
  10. Anna :o]

    August 9, 2013 at 1:54 pm

    Sorry it has taken so long for me to visit here and so glad you have at last found a diagnosis. Palmoplantar psoriasis entered my life three years ago and I guess I am lucky as it is easily controlled – though not cured. Also lucky in that pain is limited to two fingers on left hand which lock regularly.

    The rheumatologist hinted quite strongly that I should expect arthritis to follow…

    Thinking of you and loadsa hugs!
    Anna :o]

     
  11. The Bipolar Project

    August 17, 2013 at 5:31 am

    Thank god you have a diagnosis! I haven’t been by in a while, ironically because I too have been very unwell with very little to no answers. Mine turned out to be Lupus, although for over a year they thought it was some sort of spondyloarthropathy.

    I’m a bit further from my latest diagnosis than you – 4 months – and I understand the not knowing how or where to start rebuilding. It’s a tough process. I’m just beginning my rebuild now and it’s taken months of hard and slow work, and it’s been very emotionally challenging but I am feeling so much better. I hope with your treatments you will start to improve. For me as I began to improve that made it easier to find my way back to some form of living.

    I’ve also just started prednisone in the last few days – my other treatments weren’t working. I would be interested to find out how you are finding your treatment and if it’s helping.

    Did they give you any idea regarding how much they expect you to improve (e.g. will you be able to do without the crutches eventually)?

    xx

     

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