First Care Visit and Some Good News.

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!

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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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Admission Day 11: Baby Steps

{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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World Arthritis Day

Move to Improve 

I hope everyone is wearing blue today to mark World Arthritis Day 2011.

For me it provides a chance to think about the positive things about living with such an illness; like the fact that I appreciate what I would call the important things is life a lot more, as well as the simpler things, but also that I have made a lot of friends all over the world and found strength amongst communities of people that come together to support each other in dealing with it all.

Take a look at the Official Site and do your bit to raise awareness.

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