Planning for work life...: I felt strangely upset... - NRAS

NRAS

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Planning for work life...

19 Replies

I felt strangely upset (?) that I was having a meeting on what stresses & impact my work was having on me and also not being in control of the meeting which in fairness was about me but trying to predict on something I dont know about yet.

Been a total wreck with my shoulders,elbows wrists and fingers kicking off with the fatigue, I am amazed actaully got to work some days but the meeting just sapped me of all my strength. I almost felt guilty that we were having a meeting about me on a really stupid busy day and all trying to look calm with me wanting to cry as I felt the loss of my career going away from me. Not had kids so my work has meant a lot to me but certainly not the way I wanted to feel at 54.

Yet I also felt guilty because they have been so good in trying to understand RA when I am stll trying to understand it myself and the consequences of what it might/might not do.

By the way does anyone get these fantastically hot moments like you r head and chest get to spontaneous combustion moments. Doc said not menopause as thro that but wow head sweats and Vit D issues I get but cannot believe how hot I feel some days.

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19 Replies

I’m so sorry about your work I’ve been in a similar position. It makes you realise that you are loosing control ☹️

Yes I have recently been getting terrible sweats and suddenly over heated around my chest and neck area. I often have the feeling that I’m sweating around my neck but my skin is dry. Very odd feeling. GP said it’s not the menopause and not my RA ??????

in reply to

Oh mine said its the Vit D deficiency but cant believe it makes me so damn hot!

in reply to

My Vitamin D is fine . If you take VD supplements take VK2 as well helps with absorption of V D

in reply to

Thanks for the tip add that to my collection.

RAGurl1 profile image
RAGurl1 in reply to

Hmm - My Vitamin D is great, but I still have the same issue - not menopause, etc. - I have found part of mine to be my CPAP mask, but I don't know what it is the rest of the time. I generally wear a white kitchen towel around my neck and can actually soak through the thing :( Good luck getting it corrected. I haven't found out how yet :)

Ruth12345 profile image
Ruth12345

Sorry about the work situation. I had to give up my job which I had changed 3 years before as I am in the cohort of woman that had minimal notice about increased retirement age so now pension is a lot less and no work. Hey ho. (That sounds trite saying hey ho but it takes some getting used to) I was post menopausal when RD arrived but now get episodes of full body heat and rheumy not interested just said ' it happens' or 'it's one of those things' I can't remember which. Not helpful. I hope you improve soon so not as much anxiety about work. It's a hard one and I feel for you.

Maggsie profile image
Maggsie

I so feel for you Deeb. I was exactly the same, worked for a great company for 42 years . They made every accomodation to help me continue in my job (special eqt, working from home, early starts and finishes to avoid sitting in traffic etc.etc) I eventually had to throw in the towel at 60. Luckily there was a very good vs programme available which eased the blow somewhat.

But in all the years I worked I found the meetings about me the most stressful and emotional. I'm not sure whether I hated the attention or the fact that it made me focus on my limitations and feel sorry for myself but I often had a cry in the loo during and after these sessions.

Hope you can get a few more years in work, if that's what you want.

Be careful of the part-time working route unless it's a true job share. I've seen too many people expected to do the same amount of work in less hours for less pay and also finish up with a reduced pension!

Thank you all- yes talking about YOU in a meeting certainly made me have to stop bottom lip from wobbling and eyes stinging for a change from keep back the tears moment instead of RA.

it is a crappy disease overall as no start or middle or end plan..........

Hopefulfuture profile image
Hopefulfuture

I feel for you. I'm going through the same thing with work although with little support just a clear message from some that I am very inconvenient! It's hard coming to terms with this awful unpredictable disease and then on top people's misunderstanding or complete lack of any human compassion. All we can do is hope we manage somehow to keep going.

oldtimer profile image
oldtimer

I often feel more tearful when I have to fill in a questionnaire or answer questions about how my condition affects my daily life. It brings home to me just how much it impacts on my daily life - which normally I just ignore and get on with it. I'm never sure whether they are tears of anger or sorrow!

And there seems no answer to that hot feeling - I've been variously told that it's the Rheumatoid Disease, or the medication that I take for it. None of which help much!

Fruitandnutcase profile image
Fruitandnutcase in reply to oldtimer

Do any of you people who are saying that you get that hot feeling actually have a temperature?

I often feel really hot, even sweaty. When I take my temperature it’s always in the green zone on my thermometer so I obviously don’t have a temperature even though I feel like I’m going to pop.

What I find weirds is that my husband feels (to me) to be really hot - much hotter than I am because if he touches me I can feel his hand as being hotter than my body - yet he says he doesn’t feel hot. I’m 70 so it’s definitely not a menopausal hot flush and I take hydroxychloroquine and it’s very difficult to constantly feel so overheated.

oldtimer profile image
oldtimer in reply to Fruitandnutcase

I, too, have tried taking my temperature. Occasionally it is very slightly raised by perhaps 0.5 degrees, but mostly it's normal.

The sensation of heat seems to me to be coming from dilation of the small blood vessels and I have a flushed face and chest.The palms of my hands (and soles of my feet) become very red. But I can't discover a physiological explanation.

Fruitandnutcase profile image
Fruitandnutcase in reply to oldtimer

Very weird isn’t it - not to mention annoying 😉

in reply to Fruitandnutcase

Never shows up as a temp just spontaneous combustion about t happen! Some days its towel needed next day tissues.

Leics profile image
Leics

Oh dear you have my sympathy I was forced from my job due to ill health at 49 and had to endure a dismissal procedure it was either that or they were going to change my contract whereby they would contact me if and when I was needed (which would never have happened). I was always honest and worked very hard at my job for almost 10 years. At the tribunal I may as well have only been there for a few weeks 🤬. I was devastated at the time because I loved my job working in pathology for the NHS it gave me such a sense of satisfaction knowing I had made a difference to a patients life every day I was there. In hindsight they were right I couldn’t cope anymore and I was suffering so badly that my work and health were suffering too. The good news almost 6 years on life has changed for me but there are still ways that I can sometimes feel useful and not a burden. I can still laugh (usually through gritted teeth) but I definitely know where you’re coming from feeling tearful having to explain yourself to others who have no clue usually and others that don’t care just there for a box ticking exercise. Gentle hugs to you I’m sure the feeling you got having to try and put into words what you try and get on with and ignore was difficult but onwards and upwards you’re still the same person just need a little extra help and understanding hopefully the feeling will pass. I’m sure everyone on the forum understands and have probably been there too.

What a lovely reply in a weird way (bad for you) but decided RA means weird ways are the norm as you have to look at life in a different way but still being positive and keep moving forward. I think with this company it is more positive support but when still understanding the RA yourself it can get a bit too hug hug, when all you want is to cry gracefully away from them.

Probably sounds really stupid, but, (me being male, what else can you expect? Lol) has anyone considered it as an indication of the onset of a flare or maybe as increased activity of the immune system during a flare?

I suffer from them, too, incidently, so rule out the female cycle.

in reply to dembonesDAMNBONES

that might be a good answer actually as I am constantly in flare mode and not had a dayw ithout heatwaves since Jan so yes could be.

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to

I've been aware, since a very young age, that my body chucks out an inordinate amount of heat and, coupled with an immume system second to none, sometimes wondered if there was a connection.

Seeing this post set me off to musing on the issue again.

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