Sunday, October 30, 2011
Neck continues to be a nuisance!
Following last Monday's treatment, I started to get headaches on the Tuesday afternoon. I had partly put this down to the potential stress of having my appraisal in the morning (that had gone very well), but after Tuesday, things massively escalated. On Wednesday I had to leave work early owing to nausea and POTS symptoms. I then felt neck had completely restricted at it's same level of problem -not quite sure which level this is - but I have ended up with Eczema on the left side, a sore throat, both on Wednesday and then a very severe sore throat (now possibly cold) on Saturday. Bladder has been very, very affected and last night (Saturday) went to the bathroom approximately 15 times at night. Sleep has been very poor for the past few nights, and there is pain and spasm in neck and upper traps/T-Spine. Additionally arms are affected and weak. Fatigue is very much around and a very big one feels in the offering, which I am trying to fight off. Mood is affected. I am quite depressive and "flat" and there has been a mild increase in self-harm, perhaps bought on by skin irritation in the area. My behaviour is on the border and I have already hugely annoyed K by emailing her too much in the past week - so behaviour is very child-like and demanding and manic, but also cognitively "fuzzy" headed and very slow as extremely tired. I have to say that as much as K has had enough of this and suggested I found someone else - partly as a result of a lack of support for her from other medics -I too am utterly fed up with this situation as it does not make me feel at all well. We truly seem to be up against it, and I do feel for K as I am sure she has had enough. Before our new book is completed, there must, I feel, be a positive resolve of this situation.
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Wading through treacle of life?I wonder if constantly pushing yourself is exacerbating your conditon,causing overuse injuries. Then exhausting time fixing again? Caused by strenuous activity which is overstretching,straining a body prone to injury already? Running in ever decreasing circles?Pushing pushing,only to be set back,I understand your drive to be the best that you can be.I have spent ages tonight reading over past posts & follow your blog.I see a real pattern.I admire your drive,ambition need to run,dance..then wonder how realistic it is to put your fragile self under such stress.Despite the fact that you receive intensive physio, designed for you, I wonder whether in part the fact that you do have this luxury which most of us with EDS to be frank don't have on a day to day basis whether you are making your overall condition worse.I am so not saying put yourself in a wheelchair,sit on the sofa & eat chocolate bemoaning your lot I just wonder if your constant drive to be 'normal' is in fact your enemy, preventing you to live well with a chronic condition.I have had to come to terms with so much I can't do now, this does not make me a failure.I live happy accepting that I have an ncurable condition.I think K is right to suggest perhaps you find another physical therapist to work with.There is a way forward, holistically, physically & for your emotional wellbeing.I hope you dont take offence in the words I have written my intent is certainly not to offend.I am worried about writing this as I am not sure I have expressed what it is I am trying to get across in the right way!Writing from the heart here,genuinely.I have lived now for 47 years with EDS & do not have the answers!What I do read here in your blog is someone who almost seems to be chasing rainbows.I would hope that with all that you put in you were happier than you sound on a constant basis.The pysical therapy you do is monitored well I understand that & that you/your colleagues are an expert in your fields.I just wonder sometimes, to what end.Many of your activities would only work I think for many with EDS if they had the back up as you do of a permanent physiotherapist.Perhaps this is why K is struggling, knowing in her heart that the reality of this for most with the condition particularly in the current economic climate is a dream.Many who have severe EDS such as me or BG from the blog benefitscroungingscum for example,would find they would starve if their entire DLA were spent on private physiotherapy.Don't get me wrong I admire you greatly.I agree doing nothing with EDS/HMS is wrong.I wish you every success with your book I just genuinely wonder how relevant it will be for those who live with EDS without the back up you have.Coming to terms with EDS is very hard.Good advice for my emotional wellbeing I found on an intensive pain management course was to find pleasure in small things.I have been given the gift of opportunity to see pleasure in the tiniest of things, birdsong,the details on a leaf on the ground(even if I may have fallen to get to see it lol)jokes aside, others may be climbing mountains, running marathons,I have stepped sideways found an inner peace.That does not mean I don't get days when I can't stand the pain, when I hate this blasted condition I do.I wonder if battling it constantly is the best way forward.I know you purport to work 'with' your body & are eminently qualified to write your books I just hope that in the getting there you are not making yourself more stressed/physically ill than you need be.I hope you understand that I write this with every best intention if my words have come out wrong,if I haven't got across properly my concern for you I am so so sorry.Perhaps its time to take a step back,be a little kinder to yourself & your body?You sound such a lovely person.Please accept a gentle pain free bloggy hug. xoxoxoxo
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