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[SarahT]

Good point Jules
When I was originally diagnosed I made the mistake of reading a book about ME. Terrified me. Now I do sometimes use a website of forum for specific advice or info rather than devour every word. Health anxiety would be sky high.
Though Dorothy did put a link in to and ME site that has a listening ear  service which could prove valuable. My fear atm is more trying to avoid it getting as bad as it was before, so am hoping a referral may point me in a better direction. I am keen on helping myself  as much as possible. I have a few other health issues, like many of us, so am wanting advice on how to best deal with ensuring I can work best to not serviced something else!

Thankfully atm my humour remains with me. Like you I am retired so that is crucial with the fatigue. Head is still above water,bonus. X

[Jules]

Good point Jules
When I was originally diagnosed I made the mistake of reading a book about ME. Terrified me. Now I do sometimes use a website of forum for specific advice or info rather than devour every word. Health anxiety would be sky high.
Though Dorothy did put a link in to and ME site that has a listening ear  service which could prove valuable. My fear atm is more trying to avoid it getting as bad as it was before, so am hoping a referral may point me in a better direction. I am keen on helping myself  as much as possible. I have a few other health issues, like many of us, so am wanting advice on how to best deal with ensuring I can work best to not serviced something else!

Thankfully atm my humour remains with me. Like you I am retired so that is crucial with the fatigue. Head is still above water,bonus. X

That's it. Keep your chin up and head above the water. It's been my motto. But remember if you sink below, you can paddle back up because you know what to do now.

[SarahT]

Some days I do wonder if I need inflatable armbands like I had when learning  to swim as a toddler ( that bit of info ages me!)

But yes, I have done it before and got through it you are so right. It just seems what next? The past two years have been awful, health wise as well as life wise. But need to focus on the good and keep calm. Someone once asked if I was optimistic or pessimistic and I automatically replied neither. I am realistic. As long as my mental health stays ok ( and I will reaching it so need to) then so can work with the rest.
Thanks for the support Jules x

[Jules]

Some days I do wonder if I need inflatable armbands like I had when learning  to swim as a toddler ( that bit of info ages me!)

But yes, I have done it before and got through it you are so right. It just seems what next? The past two years have been awful, health wise as well as life wise. But need to focus on the good and keep calm. Someone once asked if I was optimistic or pessimistic and I automatically replied neither. I am realistic. As long as my mental health stays ok ( and I will reaching it so need to) then so can work with the rest.
Thanks for the support Jules x

Realistic is good👍

[shakilla]

Hi Sarah,
I have lupus and have been feeling horrendous since increasing my hrt. I just thought I was getting too much oestrogen but a chat with a friend who I met through the lupus clinic says hrt is contraindicated with people with lupus. Fibro I think is an auto immune disease so im wondering if its the same for you the high oestrogen is causing a flare.
The oestrogen thing makes sense to me as about 42 my lupus seemed to go and I think it will be due to my own natural oestrogen levels being reduced.
They think there's a hormonal link to auto immune diseases as more females get them so it makes sense that upping your hormone levels could re start things.

[SarahT]

Hello Shakilla,

That's interesting. I asked my gp a couple of times about auto immune diseases. I have an underactive thyroid, and Raynauds as it is. I was tested for lupus and RA as along with fibro many of the symptoms appear in these conditions. I tested negative for all so far,but await a cortisol blood test in November to test for for Addisons, which is in my family. I do want to talk with the endocrinologist as I think there are so many varying hormones going up or down in my body at the same time, it may be as you say higher oestrogen via hrt also having an affect.
Heaven knows how my body needs rebalancing with all the varying hormones fighting one another. But a flare up or resurgence does seem the case.

It really does seem more than a coincidence that high numbers of peri or post meno women are seeing auto immune problems getting worse.
I hope you are able to manage as best you can, it helps having a lupus forum to have extra support and knowledge.

Thank you, take care

[shakilla]

Thank you Sarah. Really hope you get sorted. I know how horrible it is. It's really difficult as doctors don't seem to know much about menopause and hrt. A lot think hrt is a magic bullet and that everyone feels so much better on it. And that whacking your estrogen up will fix everything. When it doesn't seem the case in everyone . It does fix my night sweats and moods but on the other side it'd making me feel really ill. Muscle pain, sore eyes, joint pain. So it's kind of which is worse really?
Good luck with it all. Hope you get some answers.

[Dorothy Gale]

I hear you, Shakilla! Me too.

Spoke to my lovely lady gp today just to update her in my worsening of my M.E and general weakness, fatigue, aches, pains, anxiety etc.

She's great but can offer no solution with it being so intwined with M E. The response I've had all my life with M E. 'Nothing we can do'.

HRT is all she says but I know my body and feel it will be too much for it. It's not the silver bullet and for people incredibly sensitive to meds etc I have to go with my gut instinct right now.

So hard. So isolating. So sad.

But I fight on. Finding joy in the little things....whist being terrified.

Xxx

[Jules]

I hear you, Shakilla! Me too.

Spoke to my lovely lady gp today just to update her in my worsening of my M.E and general weakness, fatigue, aches, pains, anxiety etc.

She's great but can offer no solution with it being so intwined with M E. The response I've had all my life with M E. 'Nothing we can do'.

HRT is all she says but I know my body and feel it will be too much for it. It's not the silver bullet and for people incredibly sensitive to meds etc I have to go with my gut instinct right now.

So hard. So isolating. So sad.

But I fight on. Finding joy in the little things....whist being terrified.

Xxx

I felt angry when so much attention was being given to long covid. The symptoms were like my ME. Essentially it's a post viral fatigue syndrome and that's the diagnosis I was given but nobody helped me and it changed my life. If its related to a pandemic though its a different story.

[Dorothy Gale]

You are absolutely right Jules. I was fuming too. As we're the rest of the M E community.

As ME sufferers we've been left to rot for decades. Totally ignored. Little to zero awareness, zero tosses given.

As soon as covid comes along....and then LC.....suddenly its a national outcry that people are so ill they are bedbound for months/years and unable to function anymore!

Well.....NEWSFLASH!

WELCOME TO OUR WORLDS PEOPLE!! US M.E SUFFERERS HAVE BEEN EXISTING THIS HELL FOR YEARS, MILLIONS MISSING FROM LIFE. AND NO ONE CAME TO OUR RESCUE.

[SarahT]

Am with you both.
Whilst I consider myself so fortunate in having many better years after 4 1\2 years of being entirely on my own coping badly with CFS, as soon as long covid began to be highlighted I was seething at all lose with ME/CFS that have been left behind and ignored. Where was the help and support then?  I 100% felt dismissed by my gps at that time. No advice, no help,no support,and little understanding.
I lost a big part of my life too and lost confidence in the medical profession unless I had an obvious symptom they could see because I was made to feel there was nothing wrong. I was astounded to find out in the last few weeks my medical notes actually read  has a history of CFS. This is the first time in 30 years I actually felt I was believed. If only one gp could have said that at the time.

[Jules]

I contacted the health secretary. I dont recall getting a reply.  I'd been ill for 10 years before I saw someone at an ME clinic. I'd been on the waiting list 3 years. By then it was utterly pointless as I'd had to get back to my job and couldn't use the strategies they mentioned, my marriage had broken down and I'd bigger issues to deal with

[SarahT]

I just hope things have moved on by now. How can someone just be left to their own devices like that? I know ME is hard to diagnose but I am pathetically grateful my gp was the one to bring it up recently. I did  not have the courage to suggest it,  and was in tears when she said that I am believed.
Thankfully I am in a good position now, supportive husband and I don't need to go out to work, but I do want to take up the referral when it comes through just soon can arm myself with some self help this time. Never a cure, only a better self management. Do I still feel bitter? Yes. And am sure you do too.
I wish you all well x

[Jules]

I just hope things have moved on by now. How can someone just be left to their own devices like that? I know ME is hard to diagnose but I am pathetically grateful my gp was the one to bring it up recently. I did  not have the courage to suggest it,  and was in tears when she said that I am believed.
Thankfully I am in a good position now, supportive husband and I don't need to go out to work, but I do want to take up the referral when it comes through just soon can arm myself with some self help this time. Never a cure, only a better self management. Do I still feel bitter? Yes. And am sure you do too.
I wish you all well x

I became ill in 2000. My doctor mentioned ME but said some people thought it was psychological  (speaking for himself I presumed). The next 4 years were hell. Hospital tests, no help, even family didn't want to know, they thought it was stress or mental health. My work wanted rid of me. The husband who eventually left, was brilliant,  but it took its toll on him. Yes I feel bitter, there were some very unkind people.  It's still something I don't tell people because they look blank or change their view of me. Let's hope things have improved and people have more compassion these days.

[SarahT]

I started to become I'll in the early 90's, the term yuppie flu was still banded about like a joke, for high fliers who burnt out - hardly describes me of course of many who became chronically ill. ME is not easily accepted as a ' proper ' illness by some I know that. I was handed a box of prozac which I refused to take as I knew although I was in a difficult mental state due to the fatigue it was in no way the cause, I felt fobbed off. I knew I felt depressed as a symptom, it I took the AD the drs would not listen beyond that.
And Like you, and like difficult menopause, there were blank faces when trying to get people to understand, so you give in and feel more isolated. I trust a few around me.

My family couldn't help even though they cared and could see how bad it was. Some days I just didn't have the strength to walk across a room. I met my now husband whilst I was ill, he has never doubted me, and even with his own health problems we prop each other up. We are strong.  It's hard that your husband tried hard but the effect ME can have on surrounding lives is a big price.

Keep going Jules, head above water. X