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Archive for February, 2012

Just a quick note to say that I sent my Rheumatologist a weekly update on my condition, which isn’t getting any better. My current joint count includes: both hips, but especially my left being painful and unstable, both knees being very swollen, sore and restricted, left elbow swollen, painful and very restricted, both shoulders painful with fluctuating levels of restriction, neck stiff and sore, left wrist and fingers starting to feel puffy and stiff and developing pins and needles through to that hand, both ankles feeling tight and the left side of my jaw quite painful and tender to touch. So, you can probably understand that my hopes for Tocilizumab ever working are slowly dwindlng away…

I said as much in my email to my Rheumatologist and was relieved that he feels we have given the current treatment combination enough time now and that he is looking into other options to see what we should try next. I have been on Tocilizumab for 6 months now; 4 in combination with Methotrexate and 2 with Ciclosporin. Blood test results have show significant improvement but my joints have definitely not; in fact, I am much worse now than when I started.  In his reply he stated that the next step will probably be a stronger anti-tnf drug; Enbrel worked for a long time, but I eventually formed antibodies against it. I know there have been a lot of advances in anti-tnf since then and so I am happy with this option.

I’m due for my next infusion on Friday and will see my Rheumatologist to discuss things further then and hopefully come away with a plan of action. I’m guessing I’ll at least have this last dose of Tocilizumab and then maybe we will start the application to fund something new. I also hope that they will be able to take some of this fluid off my joints, particularly my knees, to give me a bit more movement. Not being able to bend my knees or weightbear on my hips properly is certainly proving to be a challenge!

Until then, I’ll be doing some research of my own into the anti-tnf options available,

L

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Just a mini post. My friend told me today that she has booked tickets to the Lion King stage show and I am soo excited! It’s in December, so plenty of time to get myself feeling better, but it’s great to have things like this to look forward to!  This is the same friend who came to see me every day when I was in hospital, downloaded audiobooks for me to listen to when I couldn’t see to read, as well as a compilation album of all the songs from Disney films… and guess which is my favourite 🙂

L

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This weekend has been wonderful for lifting the spirits. Yesterday, I went for a short drive to town, which happens to be on the coast. I only stayed in the car, while the boyfriend nipped in and out of shops on the retail parks, but it was nice to get some fresh air and see the world flying by, instead of being stuck inside. Saturday was also both my Mum’s and my Niece’s birthdays and I was looking forward to spending some time with them today; making plans for the afternoon ahead, wrapping presents, buying balloons and special treats.

My brother brought my niece to visit this afternoon and stayed for Sunday dinner. They don’t live locally and I don’t see as much of them as I’d like to, so this was even more of a treat.  It was her first birthday and even I can’t believe how fast that first year has flown, she’s turning into a little individual and it’s lovely to see.  She opened her presents, had a play with her new toys and the helium balloon we’d bought her, then we all took turns in having a cuddle with the little wriggler; she will be walking soon and already speedy in getting about! After dinner, we all drove to my Mum’s to wish her Happy Birthday with some cuddles from her grandaughter. I hadn’t seen my mum since being discharged from the hospital two weeks ago and I  admit I was in need of some cuddles too hehe (You’re never too old!).

It was a struggle getting to/from the car on the crutches but once I was inside I at least had a ‘proper’ chair to sit on – I’ve mentioned the carers that visit me at home keep complaining about our sofa being too low and wanting me to purchase a special armchair… well I had a brainwave last night.  My nan had one such chair and when she passed away, four years ago, we couldn’t bear to part with it and it has sat in my sister’s bedroom ever since. It is absolutely perfect for me right now, so we have brought it home for me to sit in during the day. My nan was always a huge support to me when she was alive, I talked to her a lot about my illness and she would try anything she could to bring me relief – from adding me to the prayer lists at Church and bringing me Holy water from Lourdes, to looking into alternative therapies, treatments or foods and buying me useful gadgets to take the pressure off my joints. I think she would be really pleased to think that something of hers is helping me now; and sitting here I feel like she is with me somehow.

So a lovely weekend in all, spent with most of my favourite people. It’s amazing how these times can have such a healing effect on the body and the soul, even considering how much it has taken out of me physically (and believe me, I am exhausted now!)

I hope I don’t suffer for it too much tomorrow, but even so it will have been worth it 🙂

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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My first home adaptation has proven to be a massive help and I'm looking forward to the others.

It has been over a week since I was discharged from hospital and, finally, the care that should have been in place to support my rehabilitation at home is starting to happen.  The GP made a home visit on Tuesday afternoon; I seemed to have taken a couple of steps back in my recovery and couldn’t manage to get downstairs, never mind to the doctor’s surgery.  The main issue he came to help me with was pain. It had been much better on leaving the hospital than on entering, but it was still severe enough to prevent me from doing much and I was taking quite a bit of Oramorph to top up the baseline Morphine throughout the day.

The GP was quite surprised at how much I had deteriorated since I last saw him and, knowing my reluctance to take strong pain medication, reassured me that this was the right step to take at this time and that, once the Still’s Disease was under control, he would help me to reduce back down gradually.  He told me that I needed to take the Oramorph for all significant pain and not just when I got to the point of desperation, (which is what I had been doing), otherwise, he would never be able to find the right dosage. The next step was to record the times I was taking this Oramorph over 24-48 hours – 10ml an hour as needed –  so that he could work out how much to increase the tablet form that I take twice a day, in order to control my pain at a steadier rate. The way he explained everything made perfect sense to me and by taking the time to do so, he set my mind at ease.

On Wednesday afternoon I was visited by both a Social Worker and an Occupational Therapist, to discuss the care and support I need within the home, throughout my rehabilitation. It would take me too long to go into every single detail so I’ll try and stick to the main points. Firstly, on going through my daily routine we picked up on the things I am struggling with the most:

  1. Physically getting out of bed in the morning, especially sitting up from lying flat or even propped up on pillows. I need my boyfriend to lift me up each morning before he leaves for work and cannot nap during the day as I would get stuck.
  2. Showering/Bathing – as I can’t get into either safely at the moment and am relying on sponge baths twice a day instead, once my pain settles.
  3. Dressing – I can do this eventually but it would be nice to be dressed at the same time each morning. My boyfriend helps with certain items of clothing before he leaves for work but I have too much pain to do the rest until later on, sometimes in the afternoon.
  4. Getting downstairs – I depend on crutches and assistance to get me downstairs and am in too much pain to attempt this before my boyfriend leaves in the morning. By the time my pain settles, there is nobody to assist me and it is not safe to do so on my own, meaning I am stuck upstairs most of the day.

As a solution for the first problem, I am being provided with an electric ‘Pillow Lifter’  that discreetly fits on top of the mattress, under my pillows, and raises/reclines at the touch of a button. This is going to be hugely beneficial for me, as sitting up in bed has been a longterm issue and I feel it has actually been putting a lot of stress on my upper joints/muscles. So, I’m quite excited about this; the prescription has been submitted and it should be delivered next week!

Looking at our lovely big shower they both agreed that it wasn’t safe for me to use at the moment, even with the adaptations they could make to it, such as a block step to help me over the large step into the shower and a fitted corner seat. After lots of umming and ahhhing, they suggested that maybe bathing would be safer. I haven’t been able to get into the bath for a while now, having been unable to bend my knees, lift my legs over from the hips, or to support myself with my arms, it has seemed pretty impossible. They have suggested a bath lift and, although I haven’t seen what they’re ordering for me, the way they explained it is that I will need someone to help swing my legs over and around, but once that’s done, the lift will lower and raise me in and out of the water. Again, this sounds brilliant and I am really excited to think I might be able to enjoy long soaks in the bath once more – not only so I stay smelling lovely and fresh, but to relax and soothe those tensed up muscles.  I do have one slight concern though and that is the fact that I will be given a run through on how to use it… by Mark the physio. I’m thinking that if this really is a trial run, then I will have to root my swimsuit out and have my boyfriend close at hand! 😛

Between us we agreed that, although the dressing situation is not ideal right now, it is likely to improve when I get better management over my pain, both through the increase in pain medication that is due and also as my mobility (hopefully) increases with the Physiotherapy. This is the key thing that everyone keeps mentioning and yet the last thing to be put in place. My GP has chased his own referral up again and added that I am now a ‘crisis case’ and need Home Physio pronto, otherwise I’m going to deteriorate further. Meanwhile, I am doing my best to keep as mobile as I can but need the profressional input to do so properly. But in terms of dressing, there are aids that can help with things like putting on socks etc, but these are not funded and we are managing with our little routine for now anyway. I manage to change into clean clothes each day and that’s all that matters.

As for getting downstairs during the day that is still a big no-no. Ours is a very old, wooden staircase and they said they felt unsteady themselves and did not want me attempting it on my own with the crutches. The Stannah man is coming to see if it is possible to fit a stairlift, but they very much doubt that this will be the case; instead, there’s a chance they could fit a second bannister rail so I can alternate my weightbearing arm, but I still need assistance on the stairs.  The Social Worker has suggested that he arrange someone to call in each afternoon, as part of my care package, to assist me downstairs and set me up there for the rest of the day. It is just impossible to do so in the morning right now, because of the level of joint pain and restriction I’m experiencing, but, again, this should change over time – fingers crossed. At least we are fortunate enough to have a ‘Snug’ upstairs, with a sofa and TV etc, and this is where I am spending most of my time.

A few other things that they mentioned were applying for a Disabled Parking ‘Blue Badge’ for my boyfriend’s car; people have been telling me to get one for ages but I always felt there were people that needed the spaces far more than me.  They have referred me to wheelchair services, as I’m pretty much stuck in the house right now; I had a trip out in my friend’s Mum’s wheelchair last week and it was brilliant, so I know it will give me a lot more freedom and it should only be temporary.  The Social Worker also mentioned that it might be possible for my carer to take me out for a few hours a week, as he is concerned about how much time I spend at home alone. This has partly been my own decision as an introvert though, but I am realising that it isn’t entirely healthy and am open to the idea of some short trips to get fresh air, which I’m very much dependant on others for at the moment. Even introverts get cabin fever!

I think that covers all the main points; they watched me carry out certain tasks too, like getting out of bed and off the sofa, assessed my level of mobility with the zimmer, did lots of measuring of heights and told me I need a more supportive chair to sit in – our new comfy, corner sofa is too low and squashy 😦 – but I will have to fund this myself, so that’s on our shopping list for this weekend. The two aids will be delivered and explained as soon as possible next week and the Intermediate Care Package will start next week too, so it’s all go.

I never knew that this care was available before now;  I know I was supposed to be discharged with such things in place, but it took my aunt to chase it all up and make it happen really. But complaints aside, I’m really hoping that this is going to be a turning point for me, both physically and in terms of the support I need, which is going to help emotionally too.

Very grateful,

L

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I seem to keep following up every positive post with a negative one, but that is just how things are at the moment – I am definitely on the ‘Still’s Rollercoaster’ and wanting to get off.

Last night was the hardest night we have had in a while. As well as the obvious hip pain, I had been seizing up more and more as the day went on; my elbows, shoulders, neck and collarbone were pounding and I could barely move my upperbody and then when the time came round to move me from our upstairs Snug to the Bedroom, I discovered that both my knees were so swollen that they wouldn’t bend an inch. Trying to get me up from the sofa when I was unable to bend or weightbear with either my upper or lower body proved extremely difficult and there were a lot of tears from me and looks of sheer panic from my boyfriend. Even once we managed to get me on my feet and changed, we had the same problem trying to get me into bed. I couldn’t move my limbs myself, couldn’t shuffle or roll or do anything you take for granted getting into bed; I really thought I was going to have to sleep back on the sofa.

So swollen and full of fluid it won't bend - you can see the difference to my skinny legs.

Somehow we managed to get me in the bed, propped up slightly on my back and with a pillow beneath my locked knees, which wouldn’t fully straighten either. I’ve been this way with my knees before (many-a-time) but can usually compensate with my arms; the fact that I felt every single joint in my body was giving up on me and swelling with fluid despite all the cortisone injections, is what made it so tough. I was in bed but I was now helpless, unable to move an inch without extreme pain, or to even shift the duvet, which suddenly felt like a ton weight. This is a scary feeling; I’ve felt it before but this is one of the worst times yet. My boyfriend was on call and would have to wake me to administer Oramorph each hour until I found some relief from the deep throbbing pain that had my body in a vice… but eventually, I did manage to drift off to sleep.

The point I wanted to make though, is how much this is all affecting my boyfriend too.  I am so lucky to have him; he’d do anything for me and that’s part of the problem – because he still sees me suffering, he feels like he isn’t doing enough to take it away.  He’s starting to look exhausted himself; the weekend away helped but now we’re back in the routine of him caring for me at home and working full-time it is taking its toll again.  Plus, he can never really leave it behind when he does go to work. He says I’m on his mind all day (not in the usual way unfortunately), he can’t concentrate properly and is making silly mistakes because he is so distracted and tired. He came home complaining of sore ribs last night and only remembered after a few hours of being home that he’d actually had a bit of a fall, which explained the pain. I mean, how do you forget something like that?

I worry that he might see me in a different light all of a sudden, in fact, every time I need help dressing or getting into bed, or off the toilet or when I move like the tinman; that he’ll be put off by the rashes, the Pred cheeks and swollen, deformed joints I keep presenting him with. We’ve been going through this flare at some level for two years now which has been bad enough, but this is the worst he’s ever seen me and I know he is shocked. But he is never anything but loving and supportive, telling me that we will get through this together. I know how much it must scare him though and it breaks my heart. I want to be able to reassure him that everything will work out and I do try. At least I’m lucky enough to be able to look back on previous flares and be reassured that thing did get better; for him, this must seem neverending and unfathomable. It’s almost as if I now want to get better for him more than anything else, to give him a slice of normality again and show that this isn’t how our relationship is going to be forever. I want to make him feel better.

Because it’s so so hard for him to watch me going through this… and it’s hard for me to know that too, but how do I protect him from it? I hope, that when we can put all this behind us to some extent, our relationship will be stronger for it, but for now all I can think is….

Cruel disease.

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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