At breaking point.

[scoobydoo87]

I don’t write on here very often , but read the posts regularly. They’re my lifeline.

I was diagnosed with ME/ Fibro 2 yrs ago , I also have hypothyroidism.

I have numerous ailments, I’m still being tested for different things . Just seen a neurologist who wants me tested for Scleroderma now . Apparently one of the few things left for my gp to test for.

I gave up work 3 yrs ago , I was a painter & decorator

, housewife, gardener. You name it I did it .

I never had any help even down to helping me cook, clean or wash up.

I’m 55 , I have a husband and son of 28 at home .

They do nothing only go to work and think that’s enough.

I literally crawl round some days to get things done.

I have been in bed the last 3 days , my legs and arms are cold , painful and tingling all over. I feel dreadful.

Why do I always feel so guilty for being like this.

My husband abandons me and goes out , it’s like he’s mad with me for being poorly. I had to text my son to bring me a bottle of pop upstairs , then I was to weak to open the damn thing.

I’m convinced my husband thinks I’m making it up .

My son at least understands and has read up about my conditions ,

he has hydrocephalus, epilepsy and a right sided weakness, so he can’t do much for me .

My husband is quite able bodied.

I’m feeling extremely alone at the moment , I can’t stop crying .

I go to the doctors regularly thinking they can cure me , but they never do .

I feel like an hypochondriac and a drain on the NHS .

I could curl up and die.

I just want my life back or a bit of hope .

[kittenmittens]

Hi there scoobydoo,

I'm so sorry to hear you're feeling like this, it's really tough when you have no help.

It sounds like maybe your husband doesn't understand what you're going through. Might it be possible to give him some information to read about ME/Fibro, to help him understand what is going on and how bad it can be? Or could your son perhaps talk to him?

Another possibility is that he doesn't know how to cope with it and goes out to avoid dealing with it. Perhaps if he understood what is going on, and ways he can help and support you, he may feel more able to deal with it.

These are of course just guesses. Could some sort of counselling help you both? Or if he isn't up for that perhaps some counselling might help you, it sounds like you could maybe do with support from someone. If you're feeling really bad sometimes talking to the Samaritans can help, just having someone listen can help.

Or, if you have anyone else in your life you could try reaching out to them, letting friends or other family know that you are struggling can be hard, but it might help.

You could also maybe think about getting some help around the house, although, this of course depends on your financial situation. I know this can be a hard thing to do, as you possibly think you should be able to do it yourself (this is how I feel but I'm getting a cleaner in next week as I have hospital appointments and know I won't be able to get the housework done too), but if you had the flu you probably wouldn't be dragging yourself round to get things done, you would rest, so if you got some help to get things done you could get the rest you need.

I know it's hard but please try not to feel guilty. Something has gone wrong with your body and you are ill, this is not your fault.

You are not a hypochondriac, nobody would choose to feel the way you do right now, you know you are exhausted, and you know that is real. Don't let those who don't understand make you feel any different. And the NHS is there to help people who are sick, which you are, you are using the NHS for it's proper purpose, it's not your fault you haven't gotten better yet.

Have you posted your blood test results on here and asked for advice to see if you are properly replaced for your Hypothyroidism?

You can cope with this, right now is maybe just the time to figure out how.

I really hope you feel better soon.

[scoobydoo87 in reply to kittenmittens]

Thanks for that Kittenmittens.

I’ve told him to read up about it then he can understand better.

If I ever say anything he turns it around like I’m getting at him.

I don’t work anymore so he’s the virtual breadwinner, that doesn’t help because we don’t have the same money.

I’m lucky in one sense because I managed to get pip, it’s nowhere near as much as my income was ,but at least I feel like I’m contributing.

We used to do a lot together , he is a keen golfer as was I . I miss it dreadfully, I managed to go out in a buggy and do some holes but too much for me now, and too expensive .

I suppose I feel left out , all our friends are golfers , so I don’t see them anymore.

I don’t have a big family only my mum , who I don’t like to burden because she’s poorly herself, she lives quite a distance away.

I’ll get through this wobble I always do.

It’s just a very lonely life and a horrible way to live .

This illness is so real , but so invisible to others. People are so ignorant.

I do need to try and speak to people more ,I cut myself off then I don’t burden anyone.

I’ve had counselling but found it difficult to speak to them.

I’ll keep coming on here , it really does help Speaking to people in similar circumstances.

Thanks for your kind words . Much appreciated. X

[GolDziner in reply to kittenmittens]

I just learned about ME/CFS last night, from a movie i watched on NETFLIX called "UNREST" I strongly recommend you get your husband to watch it. It is a true documentary, & after he sees it, he will have no doubt your condition is real. I strongly recommend everyone on here to watch it. I was diagnosed with chronic fatigue back in 2012 according to my med records, but the drs never told me anything about it. I was later diagnosed with Hoshimotos, was excited to have found the problem & was going to be cured, i thought. Was no improvement from meds. Now i have tested positive 2 times for Scl-70 (scleroderma ) & have a positive ANA with Speckled pattern & finally got admitted to U of M program, where i will also be getting tested for ALS. My pain is unbearable, & I'm on alot of meds, but it doesn't even make me functional. I've been bedridden for the majority of 3+ yrs. Hope to learn more in near future, good luck to u.

[Ohms140 in reply to GolDziner]

That movie was great! I'm going around asking people on this board if they have tried long term antibiotic therapy. I was in the exact same shape as all of you on here and after taking antibiotics for three months it eradicated the symptoms for three years. All of the symptoms. When I have a virus or cold the fatigue symptoms start again but nothing like it was in the beginning.

[scoobydoo87 in reply to Ohms140]

I haven’t heard about antibiotic therapy, I will look into it. So glad it helped you . X

[Ohms140 in reply to scoobydoo87]

I'm just astonished that so many doctors are not informed that antibiotics work for so many people with CFS. By the way, cfs, Lyme, post viral fatigue, Epstein Barr, yuppie flu -- they all have the same symptoms. It was a miracle that after having this for a year a friend suggested a doctor who might try the antibiotics for what I had. I couldn't believe they worked. I noticed an immediate difference in just two weeks but I think he kept me on them for about two months. The only side effect was a curable yeast infection. No big deal when you can barely get out of bed. I'll take a yeast infection while I'm on antibiotics any day over the cfs. When I relapsed slightly he put me back on them again and I got better -- not a hundred percent but about 85%. As long as I don't do heavy aerobic exercise I'm pretty much back to normal. It's kind of a drag though that I can't do aerobic exercise for an hour a day like I used to. But I can still do light aerobic and floor exercises.

[magdar in reply to Ohms140]

Hi, may I ask what antibiotics you were on? Thanks.

[GolDziner]

And u sound just like me! Ive alienated all my friends, after cancelling on them so many times, i finally learned I'll never know when I'll have a good day. But now i dont get them anymore. I was always very active & physically fit. I dont have a husband & now fear i will never even be held by a man again. I do have a live-in caretaker tho, without her, I'd be dead.

[scoobydoo87 in reply to GolDziner]

I find myself cancelling a lot , I get mad with them for making arrangements to go out thinking that’s what I need, mad with myself for not being able to go. Feel like I’m making excuses, I just don’t want to be put in that situation. It’s a terrible way to live.

I was always the one who wanted to be doing something, it’s so hard to accept being the opposite.

What do you look forward to ?.

I have two grandchildren who are my everything, they are my reason for carrying on . They totally wear me out , I only see them every 2wks , they live some way off.

They are my ray of sunshine. When I’m sad I just look at their beautiful happy faces.

I’ve just booked a doctors appointment, surprisingly got in this afternoon.

Don’t know why I’ve bothered, I just live in hope , that I might get an answer.

I can’t actually say what sensations I have in my legs . My feet are cold , I have thermal socks on under the covers and the heatings on. From my knees up my legs are boiling and my bodies hot. My legs are tingling and weak. How do you begin getting through to a dr with all this . Feel so stupid.

My appointments not till 4pm.

Take care. Everyone. X

[Ohms140]

Have you tried antibiotic therapy? It works. I suffered for an entire year and took the antibiotics for two or three months. Sounds like a long time to take antibiotics but they have helped many with cfs me and Fibro

[marvelfan23]

Found these posts so incredibly moving to read. Im sorry that it feels like your husband doesnt understand scooby doo. I think men in general find it harder to understand illnesses especially ones where they think its more our mental state that is making us tired. I have suffered from depression and anxiety for over 2 years now almost. I first noticed i became unwell with it due to poor sleeping and feeling tired and faint and dizzy all the time. But i was tired for months with it. Even going for a walk or to the shops would make me so sleepy all day. I have had periods where my anxiety and depression been better but i stilll always feel so tired even when i sleep a lot.

I recently started a job at a Nursery full time. Im 26 and was so glad to finally be able to support myself again full time and building a career with studies. But since December its been one health woe after another. First i had a chest infection after a cold i had in November. I had to miss 3 weeks and have 2 courses of antibiotics. Then literally 2 weeks after being back in January after Christmas i got this horrible flu. I literally only been back for three days this week before i woke up this morning and had no energy at all. I literally could not take a step without feeling dizzy and faint. And cold and my legs shaking. I had to call in sick again. I have already had to ask for part time and now say i have to study my own apprenticeship course online as im too drained each week from work . Its not like when i wake up before tired a little its literally like i lay in bed and feel tired.

Im so scared as i dont know why my body keeps doing this to me especially when my immune system is low. I have been ordered to have a blood and urine test to rule out other things it might be . I just when browsing chronic fatigue only saw today that Depression anxiety and things like IBS body aches are all syptoms of it. All things that i have been suffering with for a while. The body aches and headaches a lot more since i started working at the Nursery. What with working with 3 months to 2 year olds when i struggle like this with my energy its not only dangerous for me its a risk for them if im carrying them etc. I just feel now like i cant even keep up with work and im so scared all the progress i made will be lost (

Just hard as my boyfriend he i know he loves me but he doesnt always understand the struggles in energy with condtions like depression and anxiety as well as being sleep and energy deprived. Feel like im fighting the whole world sometimes.

[scoobydoo87 in reply to marvelfan23]

Thank you for your kind words . I am so glad that we have this forum , feel so much better knowing it’s not just me .

This illness is such a mystery. It masks itself as many other things.

I really hope all goes well for you . Those desperate feelings are so familiar.

It is enough fighting this illness without thinking your fighting the world.

Keep

[scoobydoo87 in reply to scoobydoo87]

Sorry I sent this mid sentence. I’m struggling to keep my eyes open the last few days, concentration is badly affected.

One of my sleep for 72 hours phases coming on . Trying to fight it but it’s impossible.

Stay positive. Take comfort in all of us being here to support one another.

Take care . X

[Karenlynne]

My love. Poor you. It's bad enough having m.e without the added stress and distress of not just having no support but by being made to feel guilty for being ill!!!! Have you heard of Sara myhill?m.e UK specialist. Her book chronic fatigue. Mitochondria not hypochondria should open his eyes to the reality of m.e. The tests are expensive but would prove you're truly ill. My mitochondria function levels are 0.09% of the lowest of normal. Further tests show I have too few mitochondria and those I have don't work properly! I'm on a wheat dairy gluten sugar free diet. Never use anything but stevia to replace sugar. Aspartame is a real Baddie! Make sure you don't overdo things as this will further exascipate your symptoms and rest when your body tells you. My husband leaves me flasks of flavoured tea and brings me my food as I've been bedbound for nearly 5years now. Some days I manage the radio but TV went many years ago as did conversing /seeing friends..m.e takes away your life and leaves you with an existence. Supplements can help though not noted much myself. Husband bought me a special sweating unit but have always been too Ill to use it. If after reading s myhill book you think it may help you please let me know. Keep strong. Try mindfulness if able. May help. Good luck and God bless you

[scoobydoo87 in reply to Karenlynne]

I have followed Sara Myhill , I have her on Facebook, I have not had my Mitochondria tested.

I am going to look into more alternative therapy’s , rather than carrying on living in hope the NHS will help .

Just need the strength of body and mind to do it.

Thankyou for your kind words , very much appreciated.

Take care. X