Chronic fatigue

It’s true that it’s often not taken seriously because people only see you at your best. My own brother thinks it’s all in my mind, because I look normal.
It’s a nightmare because it’s so unpredictable, and what works one time may not work another. And pains can be so varied that it’s difficult not to imagine you have something else. We are advised always to get new symptoms checked out but you feel such a nuisance. I have a rule that if I have a new pain I wait a week and if it’s still there I go to the doctor.
No real help is offered here. We do have one lady who covers the Northern Trust, but all she does is print some sheets with advice and talk you through them. I missed two appointments (surprise- I can’t plan an appointment weeks ahead) and she told the doctor I didn’t want help and removed me from her list. To be honest it’s just a box ticking exercise.

Luckily my husband is very self sufficient , but I insist he keeps going to meet his friends, even if I am feeling quite bad, as I am not much company a lot of the time.
Look after yourself too.

I do hope Long Covid research helps...

There are many invisible illnesses, not only ME. People who have cancer don't look any different in the early stages. I have had breast cancer twice while having ME but no one would have guessed that I was going through hell because it didn't show.

MayBee70, I agree many people with CF can look healthy. You wouldn’t think my husband could do sport, but he says it makes him feel better. It’s hard to communicate to others that he is incapable of certain things when they hear he does sport. I feel a fraud explaining that he is ill. Sometimes I query it too. That’s the frustration of it.

Sparklefizz

^I hope research, and funding, into Long Covid may provide some answers to CF sufferers too!^

Yes. I and a fellow sufferer are hoping the same.

Long covid is so similar to ME that I hoped it would result in more help and understanding from ME but I don’t think that has happened. I had an internet friend who suffered from ME and when he sadly died I met many people from his support group at his funeral. They explained how they had to pace themselves and too much exertion resulted in being bed bound for days. I think that’s why it has never been taken seriously enough because on the surface sufferers appear totally healthy. And many of them were young professional people that had pushed themselves too hard and continued to push through their illness. The support group my friend was in was in Edinburgh.

Cressida, I haven’t hear of Spoon Theory but I’ve just looked it up. One aspect my husband mentions is that ‘saving’ energy for later doesn’t help in the way you’d imagine in his case. Also when he is feeling ‘well’, it is irresistible to capitalise on the opportunity and do all the things he can’t normally do. He revels in being able to do something, at last, if only for a brief period, and to feel like his old self while the moment lasts. When it’s bad, as you say, even reading a book becomes impossible.

I’m so glad your daughter has found light therapy helpful and has been able to return to work.

My daughter has had M.E for over 20 years but is now well enough to work part time. She was diagnosed when she was 15 and at her worst was virtually housebound. The most useful thing we found was keeping a diary of when she slept, what she ate and how she was feeling.

Everyone is different so a sufferer needs to know their own body and how it reacts to things.

My daughters diary showed she had a non 24 hour sleep/wake pattern. Every day her sleep time would move about an hour forward. It was a total nightmare attempting to plan anything. Light Therapy transformed her life. She was given a Lumie Bodyclock Alarm which regularised her sleep pattern, induced quality sleep and she started to feel better.

Sunflower2 have you heard of the Spoon Theory? It might help you understand why your husbands energy levels vary so much.

Things that you wouldn't regard as tiring might well affect him. Mental effort can be as tiring as physical effort. Simply sitting reading a book can debilitate some M.E sufferers.

When my daughter was at her worst even talking tired her. She would mix up her words and start to stammer.

Nannee49, “I've similar symptoms to your husband - lon covid leading to shingles in my case - and it's a real headf**k to feel ok, on the mend and back to my busy, productive "old self" one day and then - could be later the same day - feel so exhausted, shivery and flu-ridden it's almost impossible to function.”
Yes, yes and yes! So fickle with no obvious pattern to it! My husband has done things where he SHOULD have suffered consequences, but they never materialised. Then, for no obvious reason, he’ll do little or something that requires him to concentrate and feel awful! He seems to be in a constant fight with his body. His body says rest, but he feels if he gives in to it, he’ll lose his image of his identity. It is so sad to see. Sometimes I want him to listen to his body and rest, but I understand he doesn’t want to give in to it not working the way he wants it to.

I feel for you both Sunflower2.
I've similar symptoms to your husband - long covid leading to shingles in my case - and it's a real headf**k to feel ok, on the mend and back to my busy, productive "old self" one day and then - could be later the same day - feel so exhausted, shivery and flu-ridden it's almost impossible to function.
I feel the impact on my family and it's so upsetting to have turned from being an ethusiastic go-getter up for doing stuff into a right miserable old cow constantly not wanting to go for lunch, out for the day, even going for walk with them which I used to love. Three big positives about the publicity now given to the condition is the research to try and get some explanations hopefully leading to a cure, the recognition that it IS a condition- really important to be believed rather than written off as it's all in the mind - and the support of a long covid19 sufferers group on FB.
If it's of any help to you and your DH I find stress, even silly stress like like running out of milk and needing to go to the shops, brings on a flare up and so I need to be very mindful to minimise stress wherever I can.
I wish you both the very best in dealing with this and, ending on a positive note, it has got better for me over time, hope it's the same for you.

Nanatoone, it does sound like viruses can cause so many issues. My husband suffers with achey shoulders, I suppose they’d call that fibromyalgia as it often appears with CF, and he was despondent to find it seems to be spreading to his calves, although we’re keeping fingers crossed that may be exercise induced.

Luckygirl3. It tends to be one of those illnesses where he can ‘appear’ normal for periods of time when he’s with others. He will ‘flake’ afterwards, as if the effort of keeping up appearances has taken it’s toll. Unfortunately I get to see the side that others don’t. He needs to withdraw afterwards until he has recovered. Part of what makes it so frustrating as others don’t really see what he’s like at home after having made an effort.

I hope research, and funding, into Long Covid may provide some answers to CF sufferers too!

Yes. I and a fellow sufferer are hoping the same.

My SIL has had CF for at least ten years, he had a virus coming back from abroad and never been the same since. He’s had lots of different tests, MRIs etc and does not believe it is CF, always assumes it is something more serious. He is a vegan, never smoked or drank alcohol, very sensible eater and fit. He’s never taken a day off work even though he often looks yellow when his symptoms arise. Sometimes he is almost normal, which is wonderful. He has chronic pain in his groin area and elsewhere. Doesn’t really take painkillers. He has Gilbert’s syndrome, which is meant to be mild, but it isn’t with him and this makes you yellow. These episodes seem to coincide. My daughter has long covid, but is slowly recovering, it’s very similar in nature. I hope a cure is found as it’s a nasty thing to live with. We all know when symptoms are increasing as he withdraws.

It is a dreadful illness - I am so sorry your OH is unwell. It must be a great strain for both of you. Do you have any family support at all?

ElaineI. Gosh, that sounds horrendous. These viruses have a lot to answer for! I do hope she’s able to make a phased return to school. I was a teacher, and 5 year olds are definitely ‘full on’ even with full nursery attendance. Goodness knows how difficult it must be when they haven’t!
My husband has read about Long Covid and the similarities with CF are notable.

Sunflower2 that's interesting about long covid and similarities. DD1 colleague (another teacher) has that and has been off for over 3 months. Covid triggered severe anaemia - blood transfusions etc, severe thyroid problems amongst other things. She was not hospitalised but would get up for breakfast then have to go back to bed. She has been in talks with the head teacher about returning to work but a very slow return. She is in P1 (age 5 Scotland) and it is full on exhausting at that stage - also the current cohort have struggled a lot with learning and even sitting still as they missed a lot of nursery due to lockdowns. She is very worried as they moved to a new house about a year ago.

Sparklefizz. Yes, that sounds similar to my husband. He can do some things, seemingly easily, but will often pay the price later! And sometimes, just to add to the confusion, he will be mystified why he DOESN’T suffer consequences, after assuming he would! It is so fickle and unpredictable. He got Labrynthitis and we believe it has all stemmed from there. I hope research, and funding, into Long Covid may provide some answers to CF sufferers too!

On a worst day I can go from shopping (for short period) and feeling happy to lying in bed struggling to walk to the loo, in one day. I feel sorry for my OH. I'll come back later.

I've had ME for 32 years. It developed after a nasty virus. My husband and I both caught the virus..... he got better and I never did.

On Sunday 20th I met up with my family for a walk on the beach. I had a lovely time and because we were chatting, I walked further than I noticed. (my daughter reckons nearly 2 miles)

I felt ok at the time, but that evening I was in terrible pain (legs and hips), could hardly get myself dressed for the next 2 days, and it took me all last week to recover.

This is ME.

ElaineI I’ll take a look at Carers UK thanks. My husband was a teacher and had to retire early because of this condition. It has improved since then, but sadly not gone completely. He’s had it for about 15 years. It seemed to start after a virus. He’s interested in the research going on into Long Covid as there’s many similarities between the two.

There might be support on Carers UK site as posters there are looking after people of all ages and many health issues. DH had post viral fatigue after having pericarditis not long after his DF died. He had been going to hospital every day after work (principal teacher) and at the time our 3 DC were 5,4 and 3. He was mostly in bed - got up in mornings had breakfast and shower and had to lie down/go back to bed. It lasted a few months then eased off. Was fully fit after 6 months.

Thanks for your kind messages. It does seem to be variable for no obvious reason. It must be immensely frustrating for those with this condition. My husband can go without too many symptoms for a few days but then, as last week showed, he was particularly bad. I haven’t found any support forums for partners of those suffering with this condition, hence my posting here. It can feel quite lonely at times, but I’d rather keep my frustration from him at the same time welcoming a place to vent!

My DH had ME years ago. He was quite bad for some time but gradually improved. It can vary from day to day but can be very depressing for both the sufferer and the family who have to cope. I wish you well

My cousin has had it for over 30 years and it is immensely variable. At times she has been in a wheelchair at other times can be quite well.

I had two years like this after glandular fever in my 20’s. Absolutely awful. I learned not to overdo it.
The only positive now is, it’s a recognised condition. No longer dismissed as yuppie flu

When MzOops had ME / Chronic Fatigue Syndrome, she was exhausted all of the time, we had to carry her up the stairs most nights, but she also had nights when she would stay up all night unable to sleep.
She was like this for over a year and lost her place at Art College.
My Niece has it now, she is/was a Mental Health Nurse, has a young child and has a job to get herself out of bed, but she manages to collect child to and from school on most days, the rest of the time she lays down most of the day. She has been ill for nearly 3 years and probably will not be able to go back to her job.
Exhaustion is a symptom even when they want to do things that they enjoy.
It wasn’t something that came and went, for them anyway.