Hiya,
I'm sorry that the promised update has taken so long! I really hope that you are all doing well and I've been thinking of you all.. both those I know and those of you I don't.
For those of you who don't know me I've had severe RSD for the past 8 years (since the age of 16) and various doctors have hmmd and haa'd over whether I've had it longer (as I also have HMS). It started in my right arm and over a period of months spread through my body and I developed severe secondary generalised dystonia. This has led to the majority of my body curling up into contractures and spasms leaving me unable to walk, feed myself, or hold my head up properly.
So.. as in my last note, I've now graduated and am (once the paperwork is sent off
) a registered psychologist. Although this being the UK it means that I can't practise as a psychologist.. I'm just registered as one. If I choose to continue going down a psychology route it's going to involve an awful lot more studying - something that both my tutors and I know I am capable of intellectually but that we feel is impossible physically (at the moment). So I'm planning on spending the next couple of months back with my mum whilst I try and get some control back over my body, get a handle on the pain, get some more medical answers to stuff that's been going on and try and get into a place where I'm well enough to get back to studying and complete my masters.
Jimmy Jo (James) (my boyfriend, who I met at uni) has moved back to my mums with me and we are trying to get a house at the moment. It's been tough moving back in with mum and my sister, but it's slowly getting there. After a lot of heart searching I've realised that I need to live close to my mum and my friends in the village where I live, for many reasons but most importantly I am now frequently bed bound (lasting up to 3 months) and so I need to have people around me who know me so that I don't get too isolated. Also, although I have a live in carer (ok, although I'm supposed to have a live in carer - but mum doesn't have enough room in her house) I get severe dystonic storms, pass out frequently and have alot of dislocations when the spasms get bad - and it is only my friends and family that are able to keep me out of hospital and over-rule carer's if I'm not well enough to make decisions on my own behalf. So, please keep your fingers crossed that we can get a house sorted out, and soon!
Unfortunately the RSD refuses to leave my body alone and I've been warned by several doctors that my body is struggling to cope with the pain (and the tablets). This is resulting in blood pressure problems, tachycardia, autonomic dysfunction etc. The RSD and dystonia now impact my lungs as my intercostal muscles keep going in to spasms - leaving me unable to breathe and a blue light ambulance ride to hospital and resus on occasion. One doctor has suggested prescribing me oxygen - but I don't want it currently. Annoyingly my throat and lungs (and mouth, stomach, kidneys etc..) hurt, well, in fact they sometimes feel like they're on fire, or like someone's plunging a knife into my chest - especially when the spasms are bad. It can be really scary sometimes - twice I've really believed I was going to die when I haven't been able to breathe and I've been given mouth to mouth more frequently than I'd like to admit. It scares all of us (especially carers that don't know me well), especially as rectal diazipam which is normally used to sedate me if the pain or spasms become unmanageable, can also cause breathing problems (at the dose used for sedation at home). It's something I'm determined to learn to cope with, as we've found that positioning and chest physio can sometimes help stop or reduce the spasms around my ribcage.
My bladder was damaged roughly 18 months ago by a latex catheter (I'm very allergic to latex) and this made my bladder stop working as well as kidney problems. After months on a catheter it's OUT! YAY! The dr's want me to have a supa-pubic catheter placed (next to my belly button, which would mean a tube going through into the top of my bladder to collect urine) as I have pretty bad urinary retention. Again I want to try and find a better, less intrusive way of managing the retention and am planning on trying everything else first before considering surgery (although it would make my life so much simpler! no more hoisting from wheelchair to bed, removing my trousers and hoisting from bed to toilet and back again).
I'm abit frustrated at the moment as I dislocated my hip last week and it's gone into spasm whilst subluxed and so my right hip is currently in spasm, resulting in an angle of about 140 degrees so sitting in my wheelchair is horrifically painful. Everyone's trying to get it moving again as the longer I'm stuck in bed the less tolerance I'll have for sitting. I suppose it's lucky in some ways though as the stupid wheelchair is broken again (for once not my fault) as the main controls were snapped off and are't going to be replaced until the 25th. The other controls can be used, but they're alot tougher for people to use and results in me being banged into everything by everyone!
There is some potentially good news though. I am on the waiting list to be considered for deep brain stimulation. I have also started on Tizanidine which appears to be making a difference. I'm only increasing it slowly and have only been on it for a couple of weeks, but it appears to be loosening up some of my joints - just a tiny degree at the moment - but progress in the right direction! It's just frustrating that it's not helping my hip. Medication wise I'm now on Ketamine, Oxycontin, Oxynorm, Baclofen, Trihexyphenidryl, Diazipam, Tizanidine, Paracetemol and Arcoxia. I'm hoping that increasing the Tizanidine can give me some pain relief and improve my movement, so please all keep your fingers crossed - and I'd be really interested if any of you have experience with it. I'm currently on 8mg a day but am trying to increase to 36mg a day.
However, I've just realised I've only given you a medical update. Otherwise.. I'm missing uni and my friends from there. It's been lovely coming back to mum's as it's quieter and far less stressful - but it can still be lonely sometimes, especially as Jimmy-Jo is now working part time (he's training a new carer of mine and him going to work is a huge step towards our independence as a couple.
How do you all cope with your partners? and them going out to work, or staying as a carer or what?
I don't want Jimmy-Jo to feel that he has to be with me all the time as, especially when I'm ill or bed bound, he can be stuck by side for weeks. I want him to not be tied down by my RSD and I don't want him to miss out on life, just because my body won't let me live mine sometimes). What I mean by "independence" is that I am not totally reliant on him and he is not my full time carer. This should hopefully mean that we can spend more quality time together and appreciate each other and our time together instead of spending time together doing my personal care or dealing with pain/ spasms/ storms. I don't think I've expressed that terribly well, but I hope you can understand what I'm trying to say. Jimmy-Jo is working in our local village pub/ restaurant as a server and is loving it, especially as almost all the produce used is grown or reared in the village. Locals also go mushrooming, berry picking, fishing and cray fish fishing (langoustine fishing), amongst other foraging, to sell to the pub. Jimmy -Jo has really taken to foraging and fishing. I'm really pleased he enjoys it so much, but it can sometimes be hard not to get resentful that he can go out and do what I used to do in the places where I used to do it.
Anyway, that's it for now as this has taken me hours to complete. I hope I haven't forgotten anything too major. I'm also very sorry it's such a long email. Please let me know how you're all getting along.
All my love and pain free hugs
Rosie xxxxx