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Posts Tagged ‘Occupational Therapy’

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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I thought that I’d concentrate on an realtime update, while backdating is taking so much longer than I expected. Things have reached a sort of equilibrium on a daily basis, between struggling with pain, mobility and capability in the mornings and managing things better in the afternoons. Someone from Social Services phoned on Friday to say that I was on top of the list for a home assessment that will decide whether I need a Care Package for a short time at home.  Personally, I feel that I only need some help in the mornings as I am too sore to do anything before my boyfriend leaves for work. We have our routine that works for a lot of things, but nothing in place to help me shower or dress. Dressing I can leave until the pain and stiffness eases enough to allow me to try, although this was late afternoon on some days last week.

Showering is probably the biggest problem. We have tried it once and am in no hurry to try again; there were too many problems and tears and it was simply not safe. As helpful as my boyfriend is, he isn’t trained to shower someone who can’t stand without support and such restriction raises more issues than you would imagine. Getting into the shower, over that little step, when you depend on a frame is hard enough itself; but, once you are in, there is nothing but wet walls for support and no way to move when you can’t bear you weight through something. I was terrified of slipping and falling. So, for now I am having thorough sponge washes twice a day and hope that someone will come to our aid with something to enable me to shower.

In the meantime, they did send me round a toilet frame that same afternoon, which has made ahugedifference to me. It was so difficult and taking such a long time to negotiate the toilet, that I was worried I might have an accident at some point. Worry no more! 🙂

On a more positive note, it was Valentine’s Day recently and we had booked a weekend hotel break as we do every year. We were actually going to cancel it, thinking I was just too poorly to manage, but because it was already paid for the hotel wouldn’t allow us and so we made the decision to give it a try. Fortunately, we had only booked somewhere very close by and purely for the hotel facilities rather than any plans to sightsee, so we figured that I may as well struggle there (in luxury) as at home. I think a few people close to me thought I was slightly mad and pushing myself too much too soon, but we all have to make our own decisions and live with them.

We got in touch with the hotel to explain the situation and they were very accommodating, upgrading us to a Disabled Access room that was on the ground floor and very close to the restaurant, bar and spa. I was able to use my zimmer in the bedroom and only had a short distance to manage on crutches, to get to meals. Once that initial morning struggle to get me dressed was out of the way, we would sit at breakfast for at least a couple of hours just taking things very slowly and waiting for my pain relief to kick in. Then eventually we would move across to the bar/lounge area and set up in a cosy corner there for the afternoon.  I was happy reading and making some notes for projects I have in mind, while my boyfriend made use of the free Wifi we had been offered to make our stay more enjoyable. Add to that being waited on with lovely food, cakes, tea and hot chocolate… you can probably see why I didn’t want to come home!

So, over all we had a wonderful weekend and I’m so glad that we took the chance, instead of playing it safe. Just to have a change of scenery, to have a reason to wear nice clothes and do my makeup, has given my spirits such a boost that I feel more able to deal with the issues that the Still’s Disease keeps throwing at me; and they do keep coming. Only yesterday, while away, I was presented with a new problem – both of my knees have swollen up, meaning it is now extremely difficult to stand from sitting as I can barely bend from my hips or my knees. My thoughts are that the Tocilizumab infusions aren’t working but we have to persevere a while longer as there are so few options left treatment-wise; we don’t want to write them off too soon.

Roll on March 2nd though.

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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