Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Dorothy Gale]

Like you Sarah, I got ME in 1992. After glandular fever and losing my mum to cancer. I was 18.

I was basically left to rot. Bedridden for 4 years. Completely alone and terrified.

No help. No Internet for support like these days. Only offered AD'S.

How I survived I will never ever know.

After 4 years I began to improve and started going out once a week with my brother and girlfriend. I met my ex fiance and we moved in together and my life was so much better. I was happy.

So it CAN improve. I've had lots of relapses, the M.E has never gone away, it's always there but to varying degrees....but lots of amazing well times for which I'm so grateful.

Met my now partner, 12 years ago and been blissfully happy. We moved to our dream home in the countryside last year.........

Then I got covid....never recovered....then the PERI....and been completely incapacitated and in need of full time care since Feb. 2023.

I hope so very much one day I will rise again.

I'm finding this thread very supportive. I told my gp about it yesterday. She's glad I have support.

Thanks xxxx

[SarahT]

Dorothy your story sounds so similar to me too. I have no idea how so came through it either.
I also see some similarities to perimenopause, the incredibly difficult dips, the despair of it. But again, and with such support from the amazing members of this forum, I have been helped up through those times and reminded we that although we  are  pulled down many times, and hard as it is to see it when you are so bad, we can pick up even slightly.

I feel relieved that I had about 20 years of feeling pretty good. I think these last 2 years have taken their toll, life wise and health wise and that's why the CFS has hit again, like when your immune system is down you are vulnerable to colds etc But ME is a thousand times worse. But I am armed with knowing it can improve, we can find easier ways to reach out and we all have support.

Keep posting whenever you need to x

[Jules]

That sounds awful Dorothy. Looking back despite everything, once I changed my job which had caused the stress at the time I had the virus,  I started making some recovery and I managed to do some exciting things, travelled, met new men, new friends. I have to be mindful of my limitations and its frustrating that I can't do whatever I want but I rarely get the leg pain now, just the fatigue to different degrees. I recover quicker from physical exertion than I do from too much stress. Strange how people know so little about it when there are the number of us just on this forum

[Jules]

I'm having a really bad few days with my fatigue, today is terrible. Its the result of too much physical exertion at weekend but stress which is worse. I'm trying to follow my own advice but living on my own, I just wanted to say. It feels better when you tell someone.

[SarahT]

Hi Jules,
I know how you must be feeling. Whilst you know pacing ourselves  is the key, life doesn't always allow us that luxury. We do too much,often because we have to, not just because we actually want to,  and the extreme fatigue that inevitably follows  is the price.
Stress is 100% a factor for me too. We can plan as much as we can, try to keep on an even keep but again, real life isn't like that. When it affects my joint and muscles I try to take extra paracetamol, especially at night. That way I won't be as bad in the morning. If so have a very poor start to the day my body never manages to ' catch up'. But the fatigue ? I do not have any wise words.
I am fortunate, I have my husband in the house and he knows I do what I can on a good day, but have to do far less on a bad day. On your own I can imagine the difficulty.
Tell me, tell us when you need to. ( PM me if your prefer) It's not much but I promise you I get it. X

[Ms Jacks]

Hello everyone

I am always interested in your written words and I am new to ME ( diagnosed in June 23). I had Diverticulitis first experience and was in hospital for 3 days in IV's ( as a retired nurse I hated it) however have struggled to be ' the old me' ever since.

I have learn't quickly that I manage stress so much less this year and recently had a really hard time with my younger adult children 25,26 who behave like petulant 'teenagers' - in nursing I worked with children for 35 years.

Sadly the situation now is I had to take a step back and put them both at 'arms length' feeling worthless and guilty is on overload just now and my eldest so took his life 9 years ago so life is hard enough.

Decided to be pro active so attending weekly counselling sessions and on the waiting list to be seen for the ME/CFS.....

Ms Jacks

[SarahT]

Hi

Although I had CFS some 30 years ago so was only advised by by gp it has returned fully about a month ago, so I too am adjusting. Also on waiting list for ME clinic. I think a mixture of several physical problems, along with the peri symptoms feeling like I was under attack have definitely made stress a lot worse to deal with.
And strangely I started talking therapy today too.

You talk of referring to your old me, I tend to thinking myself as a new me. Not saying I like it, but it helps me to acknowledge and accept how much I have changed, a little bit of a more positive way of thinking. That's ok for me to say on a relatively good day,but on the bad days when it's hard to do a short walk as the fatigue is so bad then it's not easy to accept. The sadness and some anger kicks in then.

Pro active changes are such a good attitude. I wish you well, Please post for any reason. As I said to Jules, and as Dorothy Gale who is also living with this, even if practical advice can't be given, a simple understanding is there.

[Jules]

Thanks everyone. It's good hearing from people who understand that fatigue and that it's not a case of getting more sleep, mine often results from a long nights sleep. I also dont catch up if i wake with fatigue. For me these days it's pretty much fatigue rather than muscle pain. Yesterday I'd set off driving and realised I wasn't fit to so turned home and laid down all day. It was a result of walking a dog a lot at weekend and a family argument.  Its like im a balloon thats had the air let out, even my lungs feel exhausted. This morning it's lifted somewhat but im resisting the temptation to do things. It is hard being alone but at the same time it's better as I don't have to deal with people.  I'm really sorry Ms Jacks to hear about your children. That will definitely have affected your energy stock. I've decided to take a break from my family. My adult kids are fine. I think the rest of family forget my condition after 20 years, they seem to think its gone and take no account of my diminished energy and varying fatigue, particularly my 90 year old mother. Here's hoping to a better day.

[SarahT]

Jules you are so right with people assuming a decent nights sleep will see you right. It is so beyond that level of fatigue.

A ' hidden ' condition is hard for anyone to grasp. And we are all like that. Something for instance like diabetes is not ' seen ' so I can't understand the consequences of someone with that. But ME is a hard one, the word tiredness doesn't cover it, and you did right driving home again knowing you were too bad to continue.
Yesterday was an ok day for me. So I did an hour in the garden....hence today I couldn't lift the kettle to make coffee this morning,  had to sit down to get dressed. . Today I need to rest from simple tasks. Hurts doesn't it? At times we are so removed from a simple normal life.

I understand yourself and Ms Jacks needing to distance from family. With days where energy is already depleted, you can't afford to have it sapped from others. I don't think this is selfish, more a bit of self preservation.
Take care ladies x

[Ms Jacks]

Hi Jules

Thanks for your kind comments. I am really feeling it just now. my eldest son at aged 23 took his life in Sept 14 so just had Jacks 9th anniversary.

On top for the other two young adult children 25,26 acting like teenagers has taken me to a knew low level- so I have taken a break from them both and started to attend weekly counselling ' to get my head straight again' life hey.

I am learning to say 'no' and put me and health first

Ms Jacks

[Jules]

You definitely do have to put your health first and its not being selfish, you're right,  it's self preservation. I never want to be back where it started so I make sure when other people are using up my energy in a negative way, I leave them to it and become single minded and pull the shutters down. I rarely tell people about my health condition as they don't understand and I see the strange looks, it's like all of a sudden they see me differently.  I've had a friend with benefits for 6 years and only tried once to tell him using long covid to help and when he asked "so you've got long covid then?", I gave up and haven't mentioned it again. It suits me, i like how he sees me, looking younger than I am, stylish, intelligent. I don't want him to start seeing me as a sick person. Sad but the reality of having ME

[SarahT]

Jules like with perimenopause ( mine up until recent stability has been hell) and the blank looks, I  definitely choose not to tell many people about the chronic fatigue.
I am at the stage in life where I don't feel I have to explain myself in detail if I don't want to, or need to. Those that do know and just can't get it, well that's their problem.

 I think it is  healthy for you to fully enjoy your friends with benefits for what it is. He sees just you, the fun,intelligent sexy side,  and you get a part of your life to share with him, as a person who has different many aspects to her life. I suppose in a way it gives you a mental break if you like from living with a chronic condition. And if not tmi, sex is a big part of the good bits in life for a lot of us. My husband met me when I first had ME, and now he sees it again. He even doesn't get all of it, but is understanding and knows  I need to rest more and adapt to live more  than I would like.

We all get thrown crap in life, and we need to grab the good bits to balance out the hard stuff.

[Jules]

Jules like with perimenopause ( mine up until recent stability has been hell) and the blank looks, I  definitely choose not to tell many people about the chronic fatigue.
I am at the stage in life where I don't feel I have to explain myself in detail if I don't want to, or need to. Those that do know and just can't get it, well that's their problem.

 I think it is  healthy for you to fully enjoy your friends with benefits for what it is. He sees just you, the fun,intelligent sexy side,  and you get a part of your life to share with him, as a person who has different many aspects to her life. I suppose in a way it gives you a mental break if you like from living with a chronic condition. And if not tmi, sex is a big part of the good bits in life for a lot of us. My husband met me when I first had ME, and now he sees it again. He even doesn't get all of it, but is understanding and knows  I need to rest more and adapt to live more  than I would like.

We all get thrown crap in life, and we need to grab the good bits to balance out the hard stuff.

That's just it exactly. My ex husband didn't understand fully either, he helped me through a few years of hell and once I had improved asked if I wanted to go on a skiing holiday 🤷‍♀️

[Dorothy Gale]

SarahT - I hope you don't mind me using your thread to carry on my story...I just thought it keeps us ME'ers in one group and easily findable?

So....

I just needed to come an offload really.

It's been a horrible few weeks (tho don't know any other kind of weeks anymore)

My carer/partners brother died suddenly and all the devastation and heartbreak has been so terrible on him and the family. I'm trying to be there for him and keep my suffering to myself as much as I can, to spare him extra stress. He's amazing and always wants to know if I'm struggling but he is too.....and so we have to help each other.

On the latest perimenopause issues...

I wake up every day not knowing what awful new symptom will appear next....coz just when I just about get my head round something and accept it....another horrid symptom/s starts and it gets worse! I no longer say 'it can't get worse'....because I'm learning FAST that it does with perimenopause.

Now I'm dealing with symptoms head related.

I'm fully aware that as estrogen declines, things dry up. Eyes, sinuses, nose, ears, mouth.....

I've read with interest about this as I have suffered for years with sinus/ear issues (not infections...just blocked up, congestion, allergies) and thought to myself......I wonder if all I read about finding I may get am increase in these symptoms too?.....

Then BAM!

Noticing I'm getting way more dry in eyes, nose, mouth  ears....and sure enough have had gum inflammation the last 2 weeks (never had before) incredibly painful,blocked ears that feel so full of pressure, and blocked sinuses, and incredibly painful right side of face (like a numbness pain) all into forehead, jaw, cheek, ear and it's been  driving me mad.....its the not knowing why...and what's causing what...

The trouble is, I'm bedridden so nipping to the relevant professionals to address these issues is difficult.

So...I rely on nurses coming out to me.

A nurse came yest. Usually they find nothing. All normal as lots of you will relate....she said my left ear looks fine (it might do but it still hurts!).....my right ear has an infection (otitis externa) hence the pain and possible reason for refered face pain? So at least she found something.

I mentioned that I know perimenopause can have an effect on ears etc with decline of hormones and drying up leaving one prone to infection........she looked at me like I was just spouting Google and dismissed it.   

I'm so sick of these medical people being so flipping clueless about perimenopause.

Anyway...has given me steroid drops for ear and steroid nasal spray to help the eustation tube in its blocked up state.

I can handle joint pain etc to a point...but when you have extreme pain in your ears etc it's exhausting.

I listen to A Vogal talks menopause on YouTube. She's brilliant at explaining the 'rarer' symptoms.

https://youtu.be/OQCpziBnWFE?si=duxE0mdGp6mDtnvi

This is about ears.

I'm gonna try sea buckthorn oil capsule which are supposed to help dryness in perimenopause  and hope I can tolerate them. I'm so sensitive. The amount money wasted in supplements only to react badly...but I'm determined to keep trying.

I know you need to keep hydrated as not enough water makes all the dryness issues worse...but I hate water and struggle and then feel guilty.

Anyone else suffer with these head issues ears etc? Is this something that will ebb and flow or now be a permanent resident?

I'm just waiting now for the VA! this one scares me as bladder issues are hell.

I think 'perimenopause' has become the word I use all the flipping time now....and it's just become my whole life.....it used to be that my M.E dominated it......now, I don't even think about that.....it just simmers away in the background exacerbating everything else and keeping me bedbound.

Apologies LONG post  thanks for listening xx

Love Dorothy xxx

[SarahT]

Good afternoon Dorothy,

Of course I don't mind you using this thread  for whatever is needed. It makes sense, we can also easily ' find'  one another.  Hormones play a massive part in our live, and cross over with ME and other parts of our lives.

I am so sorry about the sudden death within your extended family. I know too well how devastating this is.And you partner will benefit from the support you can show to him. I have ' held up' my husband with his health and family difficulties in the pastas he does to me now. It's a strong partnership that weather's some awful times in lives. And neither keeps score, it's what you do out of love and caring.

Whilst I have not experienced the head symptoms you have suddenly suffered, I do know for me that some symptoms have faded. Notably flushes. I am lucky (?!) Not to have been too bothered by hot day flushes,  I had maybe a year of them prior to starting hrt. And they went.Then night flushes stayed for about 3 years but have gone in the last few months, higher hrt maybe? For me without doubt the moods and anxiety have been the worse.diabolical. VA has been with me for about 4 years but seems better controlled with constant topical treatment.

As for the dryness and hydration I am sure tea/coffee ( decaf best) Or a no sugar high juice squash type would be better than avoiding water. Sometimes we have to do the best we can. I drink gallons of water in the heat, but far less in the cooler days.

I hope someone can help with the head symptoms, I too have seen some of Vogels advice. Good luck with the seabuckthorn.

So keep in touch,all best wishes for you all at such a truly sad time x