CFS is taking over my life

[Cfsisdrivingmecrazy]

I just wondered if anyone else has a chronic illness as I need a bit of a boost! I try to remain positive but the last few weeks it's really started to take its toll. I have been signed off work as I cannot cope a whole day without a substantial sleep in the middle of the day and then a very early night. I have built up my career and got pretty far for my age (early 30's) and it's all crumbling around me. I have been diagnosed with CFS/ME alongside other illnesses that were previously diagnosed but under control. I have 2 very young children as well and feel I'm failing everyone. Them, my lovely husband and myself. All of my dreams for life are there but being taken over and have become impossible dreams. I feel so lucky that this is not life limiting and know it could be so so much worse but I just ant a bit of energy. I'm loosing my positivity.
Sorry for the long post guess I'm just wondering if anyone else is feeling the same due to illness so I feel less alone!
Thanks

I was in the same position as you thirty years ago at a similar age to you, also lovely husband and two young children. I have never worked again. But.. I managed to bring my children up, they are now happy and successful adults, my marriage is still happy and I make the best of life. Don’t despair, you can still have a good life with cfs if you live within your limits. You are not failing anyone, you are sick. Sending you my best wishes.

My husband was diagnosed end of last year with cfs/me. This year has been a steep learning curve for all of us. He is just about managing at work at the moment, but he is lucky in that they have been reasonably understanding! He takes time if he needs it to sleep, some days are better than others.
Research things that can help you, DH has found practising mindfulness has helped. He also takes a variety of supplements which seem to help, enzyme Q10 (120mg seems to be optimum strength), magnesium, high dose vitamin c, cod liver oil.
Things I have noticed, when he is stressed his symptoms are much, much worse. That he is much better when I drive, possibly stress related now I think about it. He struggles with not being able to things he used to. It is much better for him to do little and often rather than lots all at once.
From my perspective, I have had to take on much more of the house stuff, our social activities are very much cut, our sex life has suffered, it takes to much energy. He still wants to do everything and I feel like it is always me saying no to stuff, but if I don't he is absolutely wiped out.
We're still getting used to our new normal

Thank you both. It may sound crazy but just talking to others who actually get it is helpful. I've always been so driven and done everything at 100 miles per hour that it's just such a big shock to the system. I know I need to find my own new normal but at the minute I'm just feeling like it's such a waste of life. That sounds really dramatic!
Finances are scaring me. Just taken on a big mortgage and my wage is almost 50% of our income. Dh is so great and I'm really grateful for that. How do you find a way to occupy your mind when you physically can't do anything? Obviously I feel I can't even think straight alot of the time but the rest is hard. It torn where negative thoughts pop up!

*it's time where

Hi there, me too. I was just thinking earlier today about how absolutely pitiful I am and how anyone who knew me would be horrified about the life I live that's not 'on show'. I still work FT, but that's nearly all I do. I was in tears earlier today because I finally finished a craft object I've been working on some month ago (when I had a week break from work), and I really wanted to just take a photo of it and couldn't manage to get up the energy. Work has given me flexi-hours and I sleep three afternoons a week and go to bed early and basically do nothing else other than work and struggle to get DD's school clothes washed and have her do her homework, plus one morning volunteering once a month on a weekend. Which creates its own problems and I feel like I might not be able to keep that up :( . I feel like a crap parent and basically crap at everything, and barely able to keep up with work and often feel like it's all going to come crashing down any moment and yet tomorrow keeps coming...

My brother, aged 33, has this condition. His first bout was in his mid-twenties and lasted about 3 years. His current bout began last September and he thinks it was triggered by work-related stress.

He has since left his job and now lives with my parents. (He is single and no children). He puts such a brave face on but can anyone on here advise how best to support him?

Thanks

I'm sorry others are suffering too. I was keeping up with work (well going) but it just got to the point I physically couldnt get up. Some days DH dresses me. O know the feeling of being a crap parent. My DC said to me the other day 'you can't do that Mummy as you need to sleep". It was awful

I had ME for sixteen years but am fully recovered now. It was triggered by a difficult birth when I had my son followed by infections - it floored me and I was never well again until my recovery began.

At one point I did a self-management course and I learned lots of ways to help myself. The main one was never to reach the point of exhaustion but to manage activity carefully to avoid it. The course lasted a year and started with looking at our lifestyles, recognising triggers and learning how to understand the way the condition affected us as individuals. It included building in contingency plans for the bad days, and preventative measures to stay as well as possible. Sensible diet was a factor too.

IME the worst thing to do is pretend it isn't happening. I learned the importance of taking control of my health and developing ways to do so that suited my circumstances.

One part of the course focused on breaking down tasks into manageable chunks and building in rest opportunities whenever possible, eg sitting down to brush teeth, prepare food etc. These small adjustments really do help.

Puddelchen is right - you can still have a fulfilling life with ME but you will probably have to change your viewpoint and expectations. You can still have a social life but probably not the kind you're used to. Life can be good but how good will depend on the changes you're prepared to make to fit around your changed circumstances.

And don't forget, you can get well from ME. I never thought I would but I'm fitter and healthier now than I've ever been. Good luck, OP.

I guess you're righym I totally agree with changing expectation etc. It's just hard as at the minute I'm not far off being fully bed bound. Earlier in the year it was a little more manageable and I could plan around a little more. I guess just sleeping for 18+ hours a day leaves little time for much else and I physically cant do any going else. Can I ask if you were ever bed bound/ wheel chair bound and if so how long it lasted across the whole illness?

*anything else

I was never that ill, no. But I needed to sleep at the drop of a hat throughout the day, and my brain fog was awful and I was in constant pain. Mind you, I think I could easily have sunk that low if I hadn't had a child with additional needs. Somehow I think we get extra strength when there's no alternative. BUT I did have to cut out a load of non-essentials to allow me to look after him, and that included work. It's a good start to re-examine your life and look at where you can make changes. There will be a lot of non-essentials you can cut out, I'm sure of it. My feeling is that if you're finding it hard to get out of bed and function during the day, you need to take action now or it'll get worse. If you want your situation to get better, you have to start doing something at once before that choice is taken away from you. Please don't take risks and hope things will get better on their own, because that's very unlikely.

I have a child with AN also. Problem is I physically can not keep my eyes open and can fall asleep anywhere. Literally. Before I could push through when I really had to.

And now you can't. That's the big fact that you have to acknowledge. Can you afford to get any worse? If not, you have to take steps NOW to improve your health. It won't be easy, I can promise you that, but it's something you have to do, for your own sake and for your children's.

I can empathise with falling asleep anywhere. I remember having to choose between driving somewhere and doing the thing when I got there. I couldn't do both, and often had to recruit people to give me lifts so I could do the activity. It's important for you to be realistic about what you CAN do - and that means being able to do it without negative effects. Honesty is the key.

Sending positive vibes and support. I have ME and 4 little ones with SN and it's been so hard. If I could make one perhaps controversial suggestion... get a copy of recent bloods including a full thyroid (not just the standard nhs ones), Vit D, cortisol etc and get an endocrinologist to review not a GP.

I was diagnosed with ME after 10years of hell. I could barely get through the day and my husband had to give up work to tske care of me and the kids. I didnt see that I would ever have a decent quality of life. After running my results past an endo i am on new meds and feel literally 10 times better. I have energy, I am exercising regularly and day to day activities are manageable

It won't be the same for everyone but it's honestly changed my life... I ended up going private...but it's the best £1000 I've ever spent x

I feel your pain. I have CFS and fibromyalgia. Mine came on 20years ago following a kidney infection but has got very bad in my late forties. I have cut my working hours down to 29 and work one day a week from home-made have just put in a request to work two days from home as I'm struggling and I have a very full on job.

It's hard accepting you can't do things you once did and it is so debilitating that it can tip you into depression. There have been so many times where I have done too much, hit a wall and needed days in bed, but now I know when I am getting to that shut down stage and I accept I need to slow right down. I saw a nutritionist who gave some good advice on my diet to try and keep my energy levels up throughout the day to at least help me going at work but it is difficult.

You need to re-think things and prioritise day to day depending on how you feel .it's a juggling act especially with kids. Big hugz

You know what I'll be honest. At first your post annoyed me. Why? Because I want a magic answer but reading again now and being totally honest with myself I know you're right. Ok so tomorrow comes change. Thank you so much. I knew I would get something out of posting I have changed so much already. Work being the big one. I also let my husband do alot for me which I wouldn't before and have agreed for my mum to do the washing which helps. I need to admit even more so though that I can't do things. It just is so fustrating. I'm such an independent person and I hate people doing things for me so it's a change in finding difficult. I suppose it will become the new normal at some point though! Seeing a nutritionalist could be a good idea as I'm terrible with food. I'm just too tired to eat properly sometimes which I know is counter productive. It's getting in to a better cycle I know. Thanks

If it would help, I still have the course programme and notes from the CFS self-management thing I did. I've got them scanned and on my hard drive if you'd like a copy. Might give you some ideas for how to look differently at your life and make changes. If you want them, PM me with an email address and I'll send them.

CFS/fibromyalgia and a couple of other conditions to boot. I am only able to work part time but that is all I do. I walk in the door crying with exhaustion and collapse on the sofa and sleep. I have no life and no social life and DC suffers as well. This year even going on holiday was a waste of time as the drive down south (as a passenger) left me so exhausted I couldn’t even go for days out. I have gotten worse and have been referred back to the CF team by my endocrinologist who treats me for thyroid issues and I feel it won’t be long before I am unable to even work the few hours I now do.

In desperation I have purchased B12 and am self injecting. I do have injections at my surgery but they are only every 12 weeks and I have seen that “normal range” in the uk is low and other countries give higher/more frequent doses to people with CFS. I am also on high dose prescription vitamin D but am also using a high strength spray as again I have heard normal levels are considered too low in the uk.
It is a miserable existence, I am currently trying a load of expensive supplements in desperation.

It is good that you have a supportive husband and mum able to help, if you have people that can lighten the load use them! Have you asked work for ‘reasonable adjustments’ To help manage?
www.actionforme.org.uk/uploads/pdfs/employers-guide-to-me-booklet-2016.pdf

That would be amazing thanks. will PM you 😀

bringbackthestripes this is what I am like at the minute. The slightest thing can set me back days. I'm so sorry you feel like this too. I am very lucky indeed to have my DH. I don't know what I'd do without him!

I've had ME for 6 years. Had a full-time job and like you lived life at 100 mph. I eventually lost my job, was housebound for a long time, had an attack of severe OCD, things were pretty horrendous.

6 years on I'm still unable to work, I sleep a lot, have very limited mobility and can't do a lot that I used to BUT I have a life. I fell in love and am getting married next year. I've learned to sew, knit and crochet. I enjoy listening to audio books. I pootle around on my mobility scooter playing Pokemon go. I have friends who I chat to online or meet for cups or tea, go to knitting group. This afternoon DFiance and I went to a bird of prey centre - barely moved from the sofa since getting in, really worn out, but I went, and i loved it.

What I'm trying to say is it's been horrendous, but it's not stayed horrendous. Even though I'm still ill. When I was diagnosed the specialist doctor said I needed to "reassess my view of my future life" and he was right. I hope things improve for you, i really do, but with peace and pacing and loving family and friends, and a few supplements, I've got to a point of acceptance (NOT giving in, but accepting this is life at the moment and it would be a waste to not live it somehow - I have been working with a physio to improve my ability and do gently push myself) and have a life.

That might sound..I don't know...preachy or trying to make it sound to easy, and i know I've been very lucky in the support I have, but I guess I'm trying to say that there can be hope even if you don't recover. Life is different but it is life.

sargeant not preachy at all. Very positive. I suppose I am struggling with my new future. I will have to learn to accept it. I just feel a failure. I know I'm not and I know what I would tell others if they said that so I need to learn to listen to myself

Oh and congrats on the wedding. How exciting

Op I assume Drs have done bloods for B12 & Vit D but do you know the levels? Drs here are happy if they are within “normal” but seemingly we would feel better in the upper range of normal so might be worth getting a print out of your blood test results.

Celtic I consider that I eat pretty healthily but might try a nutritionist if it has been helpful.

imnotaceleb what meds did endo give you? I’m seeing mine again after Christmas so would love to be able to request something.

Queen it sounds like you have a handle on it, if I pm you my address would you mind sending me a copy too?

Sarge it’s great you have such a positive attitude about it all. I’m hoping to find acceptance soon.