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I'm all over the place

StarburstStarburst Posts: 2,546
edited 13. Mar 2017, 10:25 in Living with Arthritis archive
I've been told I have Ehlers Danlos Syndrome (EDS) which explains the muscle and nerve condition affecting my stomach and intestines, fainting due to unstable blood pressure and heart rate, the joint hypermobility and instability, the premature widespread osteoarthritis and the poorly functioning bladder muscles. That said, my RA is in remission at the moment, so I shan't be too ungrateful and whingey. I am a bit tearful though.

I got a letter that said; "She has TMJ operation planned for April which I understand will be a big operation. She is keen to be well, although whether that will be truly possibly is uncertain" Gaaaah. Who wants to receive a letter like that?! It's really upset me. :( Fortunately, my surgeon is confident in his abilities and he doesn't seem fazed at all but I'm nervous.

This is my third time of off sick in the last few months. I had a flare up of my stomach condition in November and had 3 weeks off sick, one day in December due to a bladder infection and I've been off the last couple of days with a sinus infection and yet another bladder infection. I'm scared that I'm going to get into trouble at work. I'm now at Occupational Health referral stage which is fine but there's no magic cure for EDS, only supportive treatment. I've not even started getting better yet. I'm still on the slow decline.

I really like my job and I need to work for my mental health. I also have limited paid sick leave and I will need it for my post surgery recovery. That's a big worry. I feel like I'm being crushed and I don't know how to change things.

Comments

  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    It is, indeed, you're 'all over the place', Sophie. The ED is just yet another blow come at a time when you are very vulnerable to start with.

    You know for yourself that we get used to coping. It's our default state. We plan in advance for things that most people don't even think about. Of necessity we become minor control freaks. I say 'minor' because we also have to learn to embrace the unexpected - the very difficult unexpected.

    On here we have 'watched' you coping from university course and exams, to working in a very demanding job and dealing with the increasing demands of the arthritis all the while. You are a brilliant example of how to deal with arthritis but...... Sometimes I think we can get locked into the coping and dealing with and juggling and planning. Sometimes we just need to relax a bit and deal with one ball at a time instead of the juggler's entire act.

    I know you love your work and are very good indeed at it but fretting about days off when that is going to be largely out of your control won't help. The ED is a body blow and the timing is dreadful but....can you do anything about it right now? Maybe not. The jaw replacement, for my money, is your priority. I've no idea what your consultant meant by the word 'well'. It's a strange one for us. We are never 'well' in the accepted sense. Maybe, retrospectively, it would have been better not to be copied into his letters but why not have a chat with your GP about it all? Sometimes docs have a language of their own. I know 'pleasant lady' means 'she's OK. She won't be a pain'. Maybe 'well' means something slightly different too.

    I send gentle hugs (((( )))) and much admiration. xx
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dibdabdibdab Posts: 1,498
    edited 30. Nov -1, 00:00
    Life has a habit of bowling us curved balls when we least expect them doesn't it Sophie :? .

    As SW said so eloquently, you've coped amazingly well with all manner of stuff that would floor many of us. For now I'm sure your focus needs to be the jaw replacement.........maybe chat that letter through with the GP and let other stuff happen around you.

    I hadn't heard of EDS until I recently became aware of a friend of my son who has it. I begin to realise that it impacts on every aspect of her life....but can I encourage you by saying that she is an experienced nurse who has recently completed a medical degree and qualified as a doctor, she is now 4 months in to her first rotation and loving the job, somedays she goes on her crutches, other days she uses her wheel chair to conserve energy and rest her legs . Because of her EDS she has an agreement that she can work less than fulltime, and is thus able to manage her symptoms, and most specifically her fatigue levels, better. What she has done is arm herself with information then shared it with those she lives and works with.......and I admire her enormously for the positive way she has moved forward.

    You have proved again and again that you are resilient and capable, give yourself time to assimilate the diagnosis and arm yourself with knowledge, then go forward as you do, resolutely, with courage and humour and adapting to circumstances. Just remember that by your attitude and courage you encourage others and help to demonstrate very powerfully that we are all differently abled but entirely worthwhile in the workplace.

    Be gentle with yourself and try to focus on living in the moment, one day at a time is enough to cope with. Sending very gentle hugs (((((( )))))).

    Deb x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I can't add anything to the wise words of the others but I can send you many hugs. ((((( ))))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • LignumVitaeLignumVitae Posts: 1,972
    edited 30. Nov -1, 00:00
    I can't add much other than to say your approach to dealing with so much is inspirational. You insist on keep marching on with life despite all it throws at you. Others would have curled up in a ball a long time ago but not Sophie. In terms of money and sick leave, as ridiculous as it sounds, stop thinking about it. Panicking will only make it worse and what will be will be. I speak from personal experiences there when I say that, I'm not being glib but it will all work out. As DibDab says, break it down, take one step at a time, allow yourself a wibble and a big deep breath before you think of going forward. Your letter is sort of heartening in that even the doctors can see there's a strong fighting spirit and may not be possible is a long, long way from is not possible. If anybody can dear girl, it is definitely you!
    Hey little fighter, things will get brighter
  • StarburstStarburst Posts: 2,546
    edited 30. Nov -1, 00:00
    Thank you for your kind words. You always believe in me, even when I've lost all faith in myself.

    I went back to work today and had an ok day. My general work-related stress levels are very high but I've let my manager know that I'm struggling and I spoke to a work friend who was really supportive.

    There's been some other difficulties in my family life but things have been modem manageable since I took a step back. I'm trying to compartmentalise each part of my life. I know I can't fix this but I can avoid letting it destroy me.

    I've joined at EDS support site and they've sent me loads of info which I will read through at some point. The muscular-skeletal stuff, I can deal with, but the other stuff is too much.

    I'll be ok, just not right now. Thank you for being with me while I'm struggling. Xx
  • LignumVitaeLignumVitae Posts: 1,972
    edited 30. Nov -1, 00:00
    See even in the heat of the moment when you are feeling fragile and struggling what are you doing? The most sensible and wide things - gaining knowledge and support, talking and letting people in on where you are at and what you are capable of and recognising that you can't fight every battle and sometimes the best thing to do is step back (I do admire you for that last one in particular because I always fail to recognise I can't fight every battle until I'm on the floor). Im impressed that even at a low point you keep finding ways of pushing forward. Struggle and wobble, cry and compartmentalise, you are in tune with yourself and what you need. Well done, most people just jibber when they are struggling, blimey, you don't though!
    Hey little fighter, things will get brighter
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I think we know you quite well by now, Sophie, and that's why we believe in you. I think most people lose faith in themselves not because they have suddenly become different people but because life is being so hard on them that they can't see the wood for the trees.

    You are still you and, as you wisely say, you'll get over it but not right now. Right now is the time to let it all settle, to absorb what needs to be absorbed and postpone what doesn't. We'll be at your side cheering you on. ((( )))
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    I can't add any better advice than you have been given already, just put yourself first,
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    ((( )))
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • mellman01mellman01 Posts: 5,303
    edited 30. Nov -1, 00:00
    Don't doubt yourself Starburst your a darn sight tougher than them, people can be so judgmental and arrogant when it comes to dealing with arthritis sufferers, if you could switch bodies most of them would be crying on the floor in minutes, sadly though you'll come across a lot of prejudice, I've almost given up trying to tell them how it is, oddly now I suffer cancer I get a lot better treatment but even with this illness again because you cant see it you still get those who think your scamming and or weak, you cant reach out to people who are they have closed highly judgmental minds, ignore them otherwise they will wear you down.
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    I agree with mellman, if you can't visibly see something no one understands how you feel. Take care (())'s
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