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Posts Tagged ‘Physiotherapy’

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 had my first outing with my carer today, for a session in a local heated pool; something that I requested, since I felt that my joints and muscles would benefit from being in the water. She picked me up about one o’clock and we drove into town. The pool is right on the coast and the weather was glorious, not a cloud in the sky, so I decided to try and walk from the car to the building rather than use a wheelchair. It was slow going, but worth it to feel the sun on my skin and the sea breeze on my face after spending so long indoors.

The pool is situated at a hotel for people with disabilities or who are recovering from illness / injury and so it is very accessible. I had been worried about silly little things like how I would get into the water using crutches, but of course this wasn’t a problem! I was expecting a sunken pool with steps down into it, but instead it was raised with a raised edge about a foot or so from the floor. This turned out to be much easier than I’d thought, I was able to use my crutches to get to the raised edge and sit on it, then my carer helped to swing my legs round into the pool near the steps down into it. From there I was able to stand in the pool, using the handrail to support myself and bouyed by the water, until I was fully in.

The water was lovely and warm, so soothing. Really, it is the first time I have been fully submerged in warm water for over six months – even though I love my bath lift, you can’t get right under and have a proper soak. I didn’t swim as we decided starting off slowly would be best, plus I doubt I could have even if I’d tried. Instead, we found a float for me to use and I just bobbed about, flexing my joints in ways I haven’t been able to out of the water. Being in water is the perfect exercise for people with arthritis or any joint/muscle problems because the water supports you, takes the pressure off limbs and joints, and makes it much easier to take them through a wider range of motion than you would usually.

We spent about half an hour in the pool altogether, which was just enough to start with I think; any longer and I might have set things back. It was slightly harder getting out of the pool but still not a problem; we were soon sat having a warm drink outside and I was home by four. I’m due back with the carer on Friday but now that I’m a member, I can use the pool whenever I like and take whoever I want as my support, which is great. It means that, once I’ve built myself up a bit and no longer need the carers, I’ll still be able to keep up with the swimming exercises and carry on with my strength building plan.

I’ve been shattered since I came home but that’s only to be expected; plus it’s a ‘normal’ kind of tiredness from actually doing something for a change, which feels good. I always feel really cold and shivery after I swim, so I’ve spent the rest of the evening snuggled under a blanket to keep myself warm and cosy.

I’ll be in bed before eight methinks,

L

Some useful articles on Swimming and Arthritis:

Water Walking (Arthritis Today)

Swimming Exercises For Arthritis  (LiveStrong)

Swimming For Arthritis (RAGuy Blog)

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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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Just a quick update for today, as I have a list of things I’m supposed to be paying some attention to and am slacking. The referral for my Home Care Package has finally been arranged and one of the carers and the Occupational Therapist came to introduce themselves this morning. The Package is called Intermediate Care and is the Domiciliary version, meaning I will get the multi-disciplinary rehabilitation in my own home, for however long I need it. This includes constant reassessment of my how I manage in my home environment, my mobility and dis/ability; aiming to improve these things at a pace that will be based on many different factors individual to me, but for now will be baby steps.

Again, it was stressed to me just how important it is to keep myself moving in little ways and often. They were quite pleased with the amount of gentle stretching I was trying to keep up and showed me a couple more exercises to add, mainly flexing at the hips and knees, but with very little / no weight-bearing for now. They looked at my transferal from sitting to standing & standing to sitting, which I was finding even more difficult than normal thanks to my fat knees; they mentioned the low sofa again and I promised that we would get a more appropriate chair for me at the weekend. Then they assessed my walking, which is not very good so early in the day, even with the zimmer.

We talked about the support I will start receiving next week, which will include at least one visit each day to make sure I am washed, dressed and safely set up in the upstairs snug. They do not want me to attempt the stairs yet, even with assistance;  every week we will set goals, so that is something I can aim for another week perhaps. My goal for this week is simply to gain better control over my pain, which in turn, should allow me to start working towards becoming more mobile. I will also have visits from the physio, to make sure I am moving joints and weightbearing correctly, and to provide more of a routine to my exercising so that I can pace myself and build up accordingly. For example: If I can manage to walk the length of our upstairs corridor and back, every hour, at the start of the week, then by the end I will hopefully be able to do two lengths every hour, and so forth.

Today was just an introduction but it all sounds very promising; in fact, it sounds like I might have quite a busy time ahead! I know it’s going to take time and won’t be easy, that the most important thing is still going to be finding the right medication to control the Still’s Disease, but I am determined to get myself back on my feet and maybe even stronger and fitter than before.  The problem I’m having right now is information overload, especially since the increase in pain relief makes me feel quite drowsy at first and reduces the number of things that manage to stay in my head!

Now on to the good news!

I heard back from my Disability Living Allowance application that was posted recently and have been awarded the highest rates for both Care and Mobility, which is going to be a fantastic help in purchasing things that will make my life more comfortable right now.  I was actually stunned when I opened the letter. I guess I have been fighting the Disability thing for a long time now and trying to struggle on; it has taken something drastic to make me realise that I need/qualify for this support and yet, to see it writing was just… hard. I don’t know if that makes sense to any of you. I am learning to (re)accept it now and, of course, am extremely grateful for the support I am receiving.

Anyway, that’s all for now. Looking forward to spending some time with my family this weekend.

L

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After two weeks in hospital, and one of my scariest flare ups, I finally came home today. It was a slightly confusing turn of events, as on Thursday they were talking about me going to a mobility rehabilitation centre for a time and then suddenly the arrangements were being made for me to go home, even though everyone seemed to have different ideas about whether I was ready for this. After a lot of discussion, I made the decision that I would rather be at home to continue my recovery as I didn’t really see what more could be done for me as an inpatient, now my pain was controlled and I’d had all the relevent procedures. I’m lucky to have good support and facilities at home, plus they have arranged for me to have home physio and an assessment by the Occupational therapists to see if there is anything more I would benefit from.

My elbow had been the main factor holding me back once my hips were sorted, as it became swollen, restricted and very painful – especially when needing to bear weight through it to use the walker/crutches. My Rheumy came to examine it and found more inflammation and fluid around the joint, so I had this injected with cortisone too, which should settle it down and give me more movement and use of that left arm. I tried the stairs with crutches for the first time and although it was hard going, I think I can manage doing it once a day until I’m strong enough to try more. One important factor that has been reinstilled with me during my hospital stay is just how important it is to keep moving, even through pain and inflammation, and this is something I will be posting about once I catch up on everything.

The past two weeks have been a real eye opener for me in many different ways, so I have lots to post about. The wordpress format seems to have changed while I was away, but I’m hoping that once I figure it out I will be able to backdate posts relating to my stay, while updating with current issues as before. The reason I feel the need to backdate is that this blog also forms a record of my disease activity, which is useful for myself (and hopefully others) to look back on. I was making notes on paper during my stay, so hopefully will be able to keep it accurate.

It feels really good to be home and I’m confident that it will speed up my recovery; little things like needing to use steps to visit my little furbaby Jasper will encourage me to do so daily and even trips to the toilet provide more exercise than having a toilet in my room. I just have to remember to go as soon as I need to as it takes me about 15 minutes to get there with my walker and I’ve had a few close calls already!

Finally, thank you to everybody who visited, sent cards and messages of support to me while I was away. It makes all the difference in the world to dealing with all this and I count myself very lucky to have you all.

Take care all,

L

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{Backdated Post}

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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{Backdated Post}

Not much to report for today. I had another session of Physiotherapy with the walker this morning, with a different Physio, who discovered that I had a physical reason for not being able to lift my foot from the floor. The swelling and inflammation in my hip was causing a slight impingement of the muscle, making it feel like the joint was loose; this should settle down once I have had the procedure to inject cortisone into the joint tomorrow, so nothing to be too concerned about for now. I still feel like I have made some progress with my walking though and was glad that I kept up with the exercises that they left me yesterday. I have been making a mental note to do a couple each hour or so and soon noticed a difference in how my knees/ankles were moving. I might not be able to lift that foot from the floor yet, but I was at least taking steps in a more natural way than before and following through with a good knee bend – baby steps, but all in the right direction.

My Rheumy visited later on in the afternoon and was pleased to see me on my feet, making the most of being able to stand again! He agreed with the Physio, that there was a physical reason for me not being able to lift the foot, and said it should benefit from the procedure tomorrow. I am due to have cortisone injected into both hip joints via ultrasound guidance, nothing too major but because it is such a deep joint it has to be done using local anaesthetic, in a sterile environment and with a lot of preparation. I am a little concerned this time round; when I had something similar last week, I was in so much pain that I probably tolerated more than I would usually, so maybe this time will hurt? I’m not having it done by the radiographer either, but my Rheumy’s Registrar, who doesn’t fill me with a lot of confidence (not that I doubt his competency, I think it is just his manner). I just have to tell myself that the overall benefits will be worth the pain, and remind myself that anything that can prevent that original pain coming through again has to be worthwhile.

I had a number of visitors today, which was lovely; my boyfriend’s mum and grandma came for a couple of hours in the afternoon and then my dad and boyfriend came in the evening. They found a wheelchair and took me for a ride round the (huge) hospital, which doesn’t sound like much but it was great to escape the confines of my room and get a breath of semi-fresh air from passing the front entrance, shame about the smokers! My boyfriend was allowed to stay past visiting hours so that he could help me wash and change for bed, he even shaved my legs for me bless him. Despite having to swallow my pride on numerous occasions during my stay, I was not ready to show off my hairy leggedness during the procedure tomorrow!

I got a bit emotional this evening too; I don’t know if it’s because of the extra morphine but I suddenly felt quite ‘loved up’ and started telling everyone I loved them and how grateful I was for their support. I know I will probably cringe at this tomorrow, since I find it hard to be open with my feelings a lot of the time. Even though they run deep and I want people to know just how much I love and appreciate them, it isn’t always easy to just say so, so maybe I should be thankful to the morphine for giving me the opportunity.

Because, I know I keep saying it, but if it wasn’t for the people I have around me, this would be so much harder; I’m not sure how I would cope.

L

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