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 had to see the medical officer at my work today. She is recommending that I be retired due to ill health and stated that it is not likely I will be fit to do any job. Is this the beginning or the end; I am almost but not quite panicking!
Keeps on ticking away
Burning up every day
Time won’t wait for you
Keeps on ticking away
Burning up every day
|—||Jamiroquai, Time wont wait|
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, I was bored and really wanted to do something different. Its too cold and icy to risk injury going out so I made a bird! Okay, so it won’t win any prizes, but I thoroughly enjoyed making it and lost 5 hours. Brilliant!