Well I have had my first real flare up since going to rehab. I have had odd bad days, but this the pain was level 10 and I chucked every drug at my disposal down my neck for a few days. Today is easier. The flare up was in my right knee which I couldn’t bend or straighten. I have an upstairs toilet so resorted to limiting fluid intake (not recommended) and going up on my bum. Anyone with HMS will know that with multiple joints involved, this was also painful but the lessor of two evils! I have worn out both knees and know I need replacements but am trying to hang it out for a while before yet more surgery. Luckily for me, my GP specializes in joints and bones and knows if I say I need help, then I need help. He even phoned me once so I didn’t have to visit the surgery! My consultants (I have 4) also are brilliant so I hate hearing when someone’s doctors are crap and disbelieving. Someone on here recommended a book which I bought and it was brilliant, It put into words symptoms and said why we have them. Get the book and show it to your GP!
What an exhausting week! Rehab is really not the easy option but so worth it! I was able to put into practise the coping strategies that we have learnt so far. Yesterday I used ‘pacing’ to plan and negotiate the weekend goals and wasn’t so exhausted come the afternoon. Today however, I have a ‘flare up’ in my knees and hands. Usually I retire to the TV, feel miserable and pathetic and nutrition goes out the door. This time, I have re read my rehab notes, made a flare up plan - which improves the mood no end - and although still in pain, actually feel in charge of it rather than it in charge of me. If anyone wants to see the handouts, let me know and I will scan them in after week 3. Everyone working on this programme is very supportive, very knowledgeable in hypermobility issues and constantly works to find ways of coping with individual problems in ways that can be used in ‘real life’. Its so very emotional having understanding people around you. Pester your consultant to send you on a rehab programme and if they don’t offer one, ask to be referred to Dr Helen Cohen Rheumatologist, at the Royal National Orthopaedic Hosp, Stanmore; not only are you taken seriously and listened to, but offered real help.
I have just finished the first week of a 3 week rehab course at the Royal National Orthopaedic Hosp. There are 8 on the course and 5 of us have JHS. We have physio, talks, Occupational Therapy (cooking, gardening, crafts) and input from a Clinical Psychologist. Its so wonderful being with others of various age ranges that understand. I have learned about ‘pacing’ and something called P.O.T.S. which explains so many other symptoms. It’s physically and mentally exhausting making you face things you’d rather not………..
I have had a really good day today. I have had 2 nights sleep courtesy of Night Nurse! Its amazing stuff and used by all emergency workers to calm the beast known as ‘shift work’
I am sitting at my dining table, music on, singing loudly (!) glass of wine, pain killers up to date and really enjoying it. The down side is that once I get into music I just want to go clubbing. Yes I know I am too old now and too decrepit and I would last 5 mins, but I loved dancing and really miss it. But it is a good day today despite that.
I am working 3 days a week. I don’t think I will ever be full time again which is a shame because I love my work and my work colleagues, but life is too short and I waste enough time as it is sitting around in pain (I do consider it a waste of time) to knacker myself out completely and just be in agony all the time.
Today is a good day and they are rare so i am making the most of it and thinking of those that are in battle with the beast known as pain.
Well, hello good day! Despite not going to bed until 11pm, sleeping for 3 hours then dozing on and off until 5.30am, today I feel good! The trick I guess is not to over do it; that’s a hard one as there is so much I want to do. No headache for once, hips are both brilliant, knees only hurt if I stay in one position too long, back feels good and I am only getting ‘gyp’ from my right shoulder. Wrists are not good as I found out when I decided to make a big pot of vegetable soup! Note to self, don’t try and lift it again! Anyway, I have done some basic housekeeping without too much bother, so I feel it’s time to wash that kitchen floor!
The trouble with days like this - as few and as far apart as they may be, is that my head is eagerly going over all the things I could do, gardening - the ground is frozen - spring clean the loft - I did say spring clean. I haven’t been in the loft for a year. It’s not difficult as there is a store room up there with a set of stairs that fold down but normal stairs are a problem so I have tried these! Going for a walk. Crisp fresh air, RSPB reserve down the road, flask of coffee and warm clothing - it’s icy out. Going for a walk would be stupid; in my head a run would be nice but the reality is I don’t have kit that fits me, and I would only manage a couple of steps before collapsing; well not collapsing but standing and ‘virtual’ collapsing!
Maybe I will go to the knitting group this afternoon - oh how my life has changed!
“The good times and the bad times both will pass. It will pass. It will get easier. But the fact that it will get easier does not mean that it doesn’t hurt now. And when people try to minimize your pain they are doing you a disservice. And when you try to minimize your own pain you’re doing yourself a disservice. Don’t do that. The truth is that it hurts because it’s real. And that’s an important thing to acknowledge to yourself. But that doesn’t mean that it won’t end, that it won’t get easier. Because it will.”