Not too good

Slosh
Slosh Member Posts: 3,194
edited 3. Apr 2017, 10:58 in Living with Arthritis archive
I feel very guilty that I've been AWOL for ages and now I'm back to moan.
I've not had a great time this year. My rheumatologist forgot to make the referral to the pain clinic /MRI but luckily she responded really quickly when I contacted her via PALS, what really annoyed me was that if my Orths consultant/his admin had actually sent out my discharge letter last August the referral could have been made then by my GP.

I'm also now coming off the steroids and while I know this is because I don't have polymylegia rheumatica and they're not a long term thing I miss how well they made me feel, I felt so much like my old self but now I'm starting to fall back again both in terms of pain, fatigue and how much I can do before things get bad is reducing. I'm also a bit dense sometimes and was shocked to read in my rheumy consultants last letter that I now have "severe degenerative changes" in my cervical spine. The pain and heaviness in my arms is also getting me down.

And! My lovely headteacher who has been so supportive of me is leaving school at the end of the year which worries me as a less supportive head could easily put me in a position where I have to give up work.

The final straw which triggered the tears today was nearly getting knocked over by some yr 6boys who were running inside today and which left me really shaky and tearful.

Sorry for this, I'm just tired of it all.
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

Comments

  • TheLordFlasheart
    TheLordFlasheart Member Posts: 346
    edited 30. Nov -1, 00:00
    No need to feel guilty slosh, just remember were all here to support you.

    I too have being going through a rough patch myself, im now on Butran morphine patches and feel like im slowly running out of options.


    Best wishes

    Alastair
    "Stoke me a kipper, I'll be back for breakfast"
  • frogmorton
    frogmorton Member Posts: 26,739
    edited 30. Nov -1, 00:00
    Oh Gosh Slosh you poor thing.

    It has all come at once hasn't it?

    I hope that once dates arrive for your MRI and for the pain clinic you will feel a little better.

    Just now it all does look rather negative. Silly boys running inside would have made you feel rather vulnerable I should think and definitely be the last straw. :?

    Sending you some ((())) while you wait for news.

    Love

    Toni xxx
    Love

    Toni xxx
  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Slosh
    when we have a long term condition it can be very difficult indeed to stay well and positive especially as our conditions fluctuate so frequently so we never quite know how we are going to be day to day. Coming off steroids is always tough in my experience because as you say it improves your condition and gives you a sense of well being. It is also frightening when you nearly get knocked over or nearly fall it can make you realise how vulnerable you are. My biggest fear is falling and tripping always puts me in floods of tears.

    I hope you are being kind to yourself and treating yourself like you would if it was a close friend feeling like you do right now. I find we are all too demanding of ourselves and we beat ourselves up too much. It is lovely to have you back, let everyone here support you through this rough patch. This community is very big hearted and you have supported many people in the past so now it's your turn.
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    I had noted you hadn't been around and it put that down to two reasons: things were either going well or not. It's no surprise that the latter was the cause and I am so sorry. We live our lives with peaks and troughs but I think it true that the troughs appear to outnumber the peaks by an unfair margin. You are in a trough but rest assured others are down there with you.

    I had a three-year love affair with oral steroids but, after a stern talking-to by a trusted rheumatology nurse, decided that to carry on taking a med that only conned me into feeling better whilst bringing further troubles in due course was doing me no favours. :roll:

    We all get tired of it all from time-to-time which is why we can truly empathise. You haven't been dense, far from it; you have been on a journey which was not planned, wanted or even considered as an option in your life but has been inflicted upon you nonetheless. It's a journey for which the price to be paid is unreasonably heavy and can only be paid for by you which is something we all understand. I don't do this often so brace yourself: ((((( ))))) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Slosh,

    Just wanted to send some hugs and understanding. Living with this ridiculous disease is tough, teaching is absurdly pressured and from personal experience I know the toll it takes. Please try to be gentle with yourself....and as for big boys running in corridors, I hope they got a good telling off!!!!!!!

    Keep talking, it helps us to feel less isolated, and for now it's your turn to receive some support and encouragement, you give it to others readily enough and sometimes we need to give ourselves permission to express our fears , frustrations and anxieties.

    Deb xx
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Thank you all so much and DD I will treasure those hugs!
    Better day at work today though I did find it a bit nerve wracking to walk down the yr 6 corridor. Yesterday it made me feel very vulnerable and I don't like feeling like that.

    I've got my MRI on Monday, my rheumy consultant booked it in ahead of my pain clinic as she said they would want an up to date one. She has said I can phone her secretary to get the results but as I don't see her again until mid-May and goodness knows when I will get to the pain clinic I will leave if (too much of a coward), all I know is that I've had to get a belt clip for my work pass and can rarely wear necklaces now as both put too much weight on my neck, and while the pain in my arms/hands is about the same, although I now sometimes need a bit of support on my left wrist too, the worst is when they feel too heavy and tired to move and all I can do is...nothing.

    Still nearly the end of term, two more weeks after this week and I can't wait as I am so tired.

    It was so lovely to read your replies. Once again, thank you
    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
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, this will be brief as I'm supposed to be cooking dinner. :roll:

    Earlier today I hear from Sticky, she is currently away and internet access is not that easy. She asked me to pass on her best wishes so here I am, doing just that.

    I wish you well for Monday, I hope all goes well and you don't feel too sore after the event. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    Hope dinner was good!
    Please pass on my thanks to Sticky, made it through the week and got some understanding from colleagues about Wednesday's incident.One has askd the head or deputy to speak to all the year sixes about it in assembly next week.

    Thanks for your best wishes for Monday, I've had so many over the past few years I'm quite used to them and can rest up on Tuesday before I go back to work.
    Hope you have a good weekend
    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
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, how are things going? The end of term must be in sight now, relief all round methinks! Have the year 6s been behaving themselves in the corridor? I hope so. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    One more week to go for me DD as we finish later than most LAs. MRI was fine....but not the after effects. Not surprising really as it means lying down and putting pressure on, the dodgy part of my neck. In fact, although it was on Monday and I was sensible on Tuesday I actually ended up taking two days off work so just had a one day week. My daughter praised me for putting myself first as I'm not good at that.

    Nearly there now, but the uncertainty at school in regards to the appointment of the new head plus the dreaded word "restructuring" doesn't help as I know I am vulnerable.

    Thanks for thinking of me
    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
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Oh dear, that wasn't the plan was it? I agree with your daughter - yes, it is difficult to put our needs first when we are so used to caring for others first (in your case family and pupils) but needs must. For what it's worth I think you made the right call, it cannot have been easy so well done.

    I've never been fully-fed into an MRI machine but I know they are far from comfortable and a real trial on our joints. When do you hope to get the results (is hope the wrong word?) My town is full of mooching school children which seems early to me, I can only surmise they go back to school straight after Easter.

    Yes, I think it true that you are vulnerable with a new regime coming in. I for one laud your willingness to keep working, I suspect I'd have thrown in my towel long ago but I am aware that my circumstances are different to yours. I suspect that once the pressure of work is removed your basic health may well improve but life is not that simple, is it? The bills will still roll in regardless of the ability to pay them, leading to stress of another kind. :roll: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Slosh
    Slosh Member Posts: 3,194
    edited 30. Nov -1, 00:00
    I will get the results mid May when I have my next rheumy appt. She did say I could contact her secretary to get them but it can wait...

    I felt the benefit of taking two days off work, although one of my yr 3s in my reading group said he'd kept looking out of his classroom door hoping to see me!

    At the moment I am still on the staff structure for next year but if whoever comes in decides I'm not worth the money it would be very easy to put me in a situation where I would not be able to cope and would have to go for early retirement on health grounds. Work is a struggle sometimes and there are times when for me it is an act of personal courage but I love it. There are no grounds for constructive dismissal which is good as my work is fine. The first stage is losing 12/48 TAs, (we are a large school), plus a couple of teachers who have done work to support needy children in each year group. My plan is to keep going to try and prove my worth, complete the training and paperwork needed to update my AMBDA registration and work on developing my craft business. In the end what will be will be and I have the satisfaction of working for nearly 3 years now post surgery.

    By the way...how are your finger nails?
    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