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Posts Tagged ‘Hip Rehabilitation’

This week is a busy one for me, everything seems to be starting all at once!  I had my first appointment with the Physiotherapy team at the local hospital this afternoon; this is on top of the physio exercises that I am keeping up with at home. Feeling brave / stupid, I thought I’d use my crutches to walk to the department, but it turned out to be miles of long corridors away and I was a bit (okay a lot!) worn out by the time I got there. I didn’t make the same mistake on the way back though I tell you! Not to mention we found there was a direct entrance to the department from a different car park, d’oh.

I’d barely sat down in the waiting room before my name was called and I was taken through to a cubicle for my initial assessment. The Physio was lovely; she had taken the time to look up Still’s Disease so that she could be better informed as to the best way to approach my rehabilitation. After some further questions into my background history and this particular flare up, she checked each joint’s mobility: my neck is almost normal and I think that is thanks to the home exercises as a large chunk of those are neck-based; my arms are a lot better than they were, but to her must have seemed quite bad because she said we needed to work on the range of movement I have, especially lifting/raising; my knees are moving better but there is a lot of muscle weakness and wastage in my upper legs, which is going to take a long time to recover; my hips, again, seem much better to me, but she said they were quite restricted mobility and strength-wise.  Assessing my walking on the crutches, she commented that I looked to be really struggling and quite wobbly; she suggested I might be better in a wheelchair for now, or using the zimmer frame for a while longer, but I told her I was managing.

I felt a little bit disappointed that her impression was that I was still in a bad way; but then she can’t compare to how I was when I came out of hospital and just how far I’ve come since then. At least I have that knowledge and the belief that some of this improvement is down to keeping up with the physio at home, so this next level of physio should help even more. Walking-wise, I have been taking things very slowly and it has taken a long time to get to this point; it’s only the past week or so that I have moved onto using the crutches as much as I have. Maybe I’m being stubborn, but I think it would be a shame to go back to the wheelchair and zimmer. I admit my legs are wobbly right now, but I’m sure it’s just due to doing so much this week; I’ll give myself a break tomorrow and take it easier at every opportunity I have.

Anyway, back to the appointment. The Physio decided that, because I’m struggling so much with my mobility ‘on land’ (ahoy!) right now, the best thing to start with would be Hydrotherapy, which is exactly what I’d been hoping for.  She invited me to a class that runs specifically for women with Rheumatological conditions and introduced me to the physio that runs it. It sounds like quite a large Hydrotherapy pool (as opposed to my old Hydro’s ‘tin bath’), and each person gets their own guidance and exercise regime while you’re in there. She explained that her aim would be to build the strength in my legs and get me to a point where I could walk unassisted in the water, which is easier than on land. Once I reach this point, then I can return to the regular physio to carry on this strength-building and start the process of trying to walk unassisted on land, using parallel bars etc.

Maybe I’ve been a bit naive, but I wasn’t expecting my recovery to be such a long and intense process. I’m trying to think back to the previous times I’ve had to get myself walking again and I don’t remember it being so hard. Maybe it’s because I was younger then, still a child really, and so I naturally bounced back quicker? But my main suspicion is that I was just stronger over all; that over time I have let myself waste away too much and become weaker than I should have been, meaning my body wasn’t prepared for such a shock to the system. All the more reason to make sure I continue to build myself back up now and after my recovery – the stronger our bodies, the easier they can fight all this I reckon.

She seemed quite positive I would at least get back on my feet eventually, which I guess I should be grateful for.  I am a bit worried about how I’ll manage during our trip to Dublin next week, but I will manage somehow – where there’s a will there’s a way and all that.  I start the Hydrotherapy class on Monday afternoon and I’m really looking forward to it, then I’ll be able to take some of the exercises with me to the pool on Tuesday and relax for the rest of the week.

We stopped at one of the local farm cafes on the way home, for a hot drink and a slice of cake, as a bit of a treat. Since the sun was still out and it was quite warm, we sat at a little table outside and spent an hour watching the agricultural world go by – so peaceful. I’ve often thought I’d have been quite happy growing up on a farm and one day I’d love to have a house with enough land to keep a few animals.

It’s good to look to future and dream :),

L

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I thought I’d post a more thorough update on how things have been since my first Infliximab infusion last week, especially since most of it is positive. I noticed almost straight away, the very next day, that I had less pain and was able to move better: things that I had been finding hard, such as sitting up in bed or standing from a chair, just felt that little bit easier and have remained so. I’ve also noticed a slight decrease in swelling around certain joints, my left elbow is straighter and my knees are less restricted. This improvement has been maintained each day and, rather than the rollercoaster of good days and bad that I had previously been stuck on, I seem to have reached an even keel, which is brilliant.

This stability has enabled me to stick to a better daily routine, including with my Physiotherapy exercises. I now have set times for my sessions and have even been able to increase the number of repetitions of some of the easier exercises, without suffering for it. I try and push myself a little bit harder each day, but know to stop when I feel the strain not after it, and this seems to be working. My arms in particular are moving much better than they were and the spasms that I was experiencing in my neck / shoulder / collarbone area have definitely lessened, although it still feels like something is ‘catching’.  I also have a better range of movement in my neck, something that has been restricted for months and months!

I’m defintely getting stronger in my legs and am able to bear more weight through my hips now too; I even managed to raise my leg off the bed when lying flat for the first time the other day – an exercise that I’d had particular trouble with – and I’m gradually increasing how long I can hold it there for. Not being able to do this had been upsetting me, so to me this is a big sign of improvement. I still have the muscle wastage at the tops of my legs and around my hips, but I know this is something that will take time to recover and at least it isn’t any worse. I’ve just started to add some resistance exercises to my lower body pyhsio, using therabands, so this should help build up some strength and muscle too. I’m really pleased now that I pushed through the pain and made myself exercise and I’m even more determined to keep it up and not slip back into bad habits. Who knows, maybe I’ll be lifting weights next?! 😛

Walking-wise, I am still mainly using the zimmer frame to get about and managing quite well with it, but I am at least using the crutches every now and again: I chanced a short walk around a shop on them the other day, which was an achievement in itself, although I felt a bit wobbly and it wore me out more than I expected. I’ve been able to manage the stairs a few times (with help), on the crutches too and so have had a few evenings downstairs, which is great. Not only does it mean a change of scenery and better zimmering space, but I’m able to pop in to say hello to my ‘furbaby’ Jasper the rabbit, who I miss like mad. I’m hoping that things are going to get better and better from here, that I’ll be able to use the crutches a little bit more every day and to go downstairs once a day too. I have three weeks until our Dublin trip and it would be great if I could manage with crutches alone.

I still can’t say if all this is thanks to the Infliximab / Remicade or the IV steroids, but any relief, any improvement is a welcome thing.  Despite not wanting to get my hopes up too much, I at least feel pretty optimistic about the new medication and I think that’s allowed. The only bad day I have had since starting it has been today actually. I woke up this morning with a very sore mouth and swollen tongue, (which has become increasingly worse), and when I looked in the mirror I had several ulcers/sores on my gums and a strange raised rash-type thing covering my tongue. I’ve also been feeling really weak and shaky, my pulse is racing and I’m exhausted, so for the first time since being in hospital I have slept during the day and am currently curled up on our sofa with a blanket.  From the information I was given, it looks like it could be a side effect of the Infliximab or of my immune system being wiped out by it; but hopefully, like so many of these things, it will just be a minor blip and disappear as fast as it came.

At least I can finally say there have been more good days than bad 🙂

L

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Today was a rather confusing day. I woke up in a lot more pain than usual and several jonts in my arms had started to swell and seize up again; not surprising when I was having to bear my weight through them when using the zimmer frame to walk about.  Disappointingly, I needed more help than I had done over the past couple of days and the nurses soon noticed and assured me they’d get in touch with my doctors and the Pain team.

Late morning, the Physios arrived to see me. Despite my painful arm joints, I had to keep on using the zimmer as the ‘lesser of two evils’; I couldn’t come this far in building up my walking, only to let my hard work go down the drain to protect my arms. Plus I was making progress. Since the cortisone injection in my hip the previous day, I was finally able to lift that stubborn left foot of the floor a few centimetres and take a proper step. This did a lot to reassure me that I would get normal function back, because I was still very worried it would be lost at this point.

The Physios had their concerns too: now that I’d had the procedure to my hip, the rest of my recovery was down to rehabilitation and they mentioned that I was due to go to a Residential Mobility Rehabilitation Unit for a few weeks. However, although I’d benefit pysically, they said that because of my age various people felt that it might not be the best place for me emotionally, being mainly old people there. Instead, they had put the suggestion forward to provide the same support within my own home, which to me sounded much better.  But I knew I had to have that support in place straight away, because I wouldn’t be able to manage on my own and they agreed. They left shortly afterwards, telling me that they would communicate my thoughts and, if it was agreed that I could avoid the Rehab Centre, would start putting the ‘home plan’ into action. They would see me on Monday to make a start on using crutches.

I have to admit, I was a little worried that I’d end up at the Rehabilitation Centre; my Nan had spent time in one, so I had a clear image of what they were like. It sounded promising that I’d get the support at home though and nothing was going to happen just yet, so I tried not to think about it too much. My main concern for now was to sort my elbow and shoulder joints out, so they wouldn’t prevent me from using the zimmer and carrying on with my walking. The day passed as normal; then, at some point in the afternoon, a doctor I hadn’t seen before came to see me. I assumed that he was one of my Consultant’s juniors, come to assess my joints and pain, (which was quite severe by this point), but instead he declared that I was free to go home!

I was a bit stunned as he left the room. Obviously, it was great news that I could go home, but only hours earlier I had been facing the prospect of a Rehab Centre and talking about my next Physio session on Monday…. then again, it was Friday and I know how they like to clear people out before the weekend if possible!  A nurse came in to tell me that my medication was all ready and I asked her all the questions I hadn’t managed to get out with the Doctor: mainly about the support I would receive at home. This wasn’t something she’d been aware of and so she left to chase it up, returning to say that I could only leave when that was arranged and the appropriate equipment provided.

A lot of confusion ensued.

The Physios returned and weren’t very happy that it was all happening so sudden and fast – they had a few hours, last thing on a Friday afternoon, to liase with a different County Trust about providing my care at home – something that proved very difficult, taking over a week to put in place – and to get me up on crutches, ready for home. I was already struggling with the zimmer, but putting weight through my locked elbow using crutches was agony; I knew so and they knew so, but it seemed I just had to grit my teeth and get on with it. I didn’t manage very well – a couple of steps – and the stairs were a nightmare that drove me to tears, but by this point I felt so confused and frustrated with the situation that I just wanted to go home. The Physios had their doubts but the decision had already been made..

Back on the ward, nurses and auxilliaries kept popping in to say their goodbyes. Eventually, my Rheumatologist came to see me and the whole situation suddenly felt too much. Here I was, feeling worse than I had been, unable to do much for myself or to use the crutches to get around and yet being sent home all of a sudden; moreover, I was being told different things by different people about whether I was ready to be home or not. And so I got a bit emotional. I don’t really remember what bothered me the most, I think that was probably the issue – I didn’t know what I felt myself anymore – just bewildered.

My Rheumy explained that I wasn’t actually admitted under his care (as I had come via A&E), but the care of the doctor who had visited me earlier, and it was this doctor’s decision to discharge me. He also explained that now they’d done the procedure, there was little else they could do for me in hospital, but that he was happy to request I stay until Monday if I felt I needed it in order to cope better. But who asks to stay in hospital? If they thought I was well enough to go home, I wanted to go home! Aslong as I had the support they had promised in place. He took a look at my joints before he left for the weekend. There was nothing he could do about the shoulders, since they had only been injected the previous week, but he agreed that we should inject the left elbow. This elbow has troubled me for some time now, swells painfully and locks at an angle, but doesn’t respond very well to cortisone injections; however, it was worth a shot (excuse the pun) if it gave me a better chance with the crutches.

In the end, they weren’t able to provide me with the equipment I needed for home that night and so I had to wait for it the next day. It somehow made staying there harder than it had been, but at least I knew I would be home soon and it gave me a little bit of extra time to practice using the crutches.

I was right to be worried though. Even then, I didn’t realise quite how hard a transition it would be to go home, but we would do it and manage.

L

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