Just an Update…

I feel like I’m in a constant state of hibernation – not only am I unable to venture out due to inexplicable pain levels, I seem to have shut myself away from the world completely the last few weeks by rarely going online… I promised myself not to neglect my blog but it appears as though I’m doing just that!

Things haven’t changed much. I decided to go ahead with one on one physiotherapy up North but it was a bad idea. It left me in such agonising pain I don’t think I’ll ever be able to bring myself to get in a car again. I know it sounds extreem but I was in a living hell. Imagine holding your hand over a flame for as long as possible until you need to pull your hand away – that’s what my whole upper body felt like for the week after my appointment – the pain literally made me physically sick.

I was supposed to have my psychiatry appointment the day after as well but there was no way I could make it. I sent my Mum as I didn’t want them thinking I couldn’t be bothered and she literally begged and pleaded with them to enable me to have a home appointment – well it seems to no avail as they said they’d send me a letter which I still haven’t received…

Anyway, I got the general practitioner round and told him I could no longer make the trips up to pain-management and that I needed to try out different medication due to how much worse I’m getting on the current meds I’ve got.  Apparently he’s not in a position to do that as he doesn’t know enough about CRPS and the only way I can try out different meds is if I head back up North to the ‘specialists.’ He wouldn’t even change the medication for my depression after telling him I was suicidal – he then had the audacity to ask me to tell him about my suicidal feelings – why on earth would I delve into that part of me and express those wretched feelings when you’ve already stated you can’t do anything thing about it….

Our health service is a joke… It’s only my Occupational Therapist I feel is with me on this and takes what I say literally. When I say I’m house-bound I mean it!!! I’d give anything to go for day out, or take a trip up to my Mums house and be able to go for a Jimmy Riddle without the concern of using the stairs or just take one fucking step without being plagued by pain, and, I’d give absolutely anything to be able to start paying my taxes again.  I wish I wasn’t incarcerated in my own home but the reality is I am and that is the be all and end all…

On top of everything else i’ve started developing blisters on my left foot which is the one I fully weight bear on when using my crutches. At first I thought it was a bit of athletes foot which I had once before a few years ago, but I’m beginning to think it’s more CRPS related. It seems to be one thing after another at the moment – I spend most of my time lying on the couch as sitting is becoming more and more painful and the burning in my butt cheeks more intense – which is leading me to think the wheelchair won’t really make much difference to my life.

On the positive side though,  I’ve started using my Pilates reformer again but I’m just doing minimal exercises every other day, sometimes leaving it two days instead of every day like before. If this doesn’t do me any good I’m going to get a massage therapist round once a week… I have to keep trying out different remedies in the hope of some relief or an improvement in my condition…

7 comments

  1. I feel your pain, quite literally. It’s the medical professionals not listening about wishing that it were different that can be so infuriating. I have to say my most recent experiences with our Pain Clinic in Norfolk have been far more positive of late, giving alternative remedies, working with me to change my meds etc. I wonder if these services ever share best practice? Or how we can ensure that they do………………..Wishing you some relief soon mate!

    Liked by 1 person

    1. I wish they would listen when I tell them how bad it is. I know they don’t believe me when I say I can’t make it to pain-management because of the pain it causes, it’s so frustrating – i just wish they could feel what i feel, they would soon change their tune… I’m glad you’re having a positive experience down in Norfolk and i hope it continues that way for you… Thanks a lot for your message…

      Like

  2. Thanks for the update, I’m just sorry to hear that the physio has such a detrimental affect. It seems to be a problem with many chronic illnesses. Don’t feel guilty about neglecting the blog – much as we value the read – don’t let it become a chore.

    Sending some positive thoughts and prayers your way, just wish I could discover a cure!

    Liked by 4 people

    1. I think I need to accept the fact physiotherapy is not for me as it just keeps making me worse. I guess I’m just clutching at straws when I keep trying it forgetting how bad it made me feel the last time and the one before that.

      Thank you for your thoughts and prayers and please let me know if you discover a cure…

      Liked by 1 person

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