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Really struggling to cope with CFS/ME :(

Posted , 10 users are following.

Caz-
Caz-

Hi,

I'm after some advice really.

Bit of background info.

I had glandular fever in Sept 2014 and since then have had a gradual onset of various symptoms, constant fatigue, anxiety - resulting in panic attacks, confusion, brain fog, muscle aches, emotional instability, poor temp control, vertigo,... The list goes on - but you get the picture, basically I feel like a 90 year old with constant flu!

I'm 30 years old, have 2 children aged 12 and 5 and currently work 4 days a week after dropping a day due to not coping full time. Anyway, about 6 weeks ago after months and months of blood tests and various supplement treatments I was diagnosed with CFS/ME which has been confirmed by a specialist at the hospital.

Now, since then I have really struggled to accept the diagnosis and my limitations!

I have been trying to 'push through' the symptoms so I can fulfill my responsibilities at work and home but it's safe to say this is not working.

I work term-time only and have returned to work last week after xmas break, I've been back 3 days and feel like I've been hit by a train. By the time I get home and have managed to pull some kind of dinner together for the kids, I am exhausted, crying every evening because I just can't cope and then feel like I have no energy left to eat or even shower.

My husband works long days and I am literally dragging myself through until he gets home at about 6:30pm, he then has to take over pretty much so that I cane eat for 30 mins before having to get the children off to bed.. More and more he's even having to do this. I feel terribly depressed by the situation and have got to a point where I actually wish I wasn't here sad

I've even said to my hubby that he should take the kids and move out. As they'd be better off without me and my drama.

He's incredibly supportive and completely dismissed the idea, but I feel useless and I just don't know what to do anymore.

I've had 4 weeks off work since September and feel incredibly guilty about that too, basically I'm just constantly beating myself up and the symptoms seem to be getting much worse, I can barely get out to do the shopping and am spending all weekend at home trying to catch up, but that means the children are having to do the same.

I feel terrible about it all, does anyone have any advice as to how I can manage this better?

Sorry for the long post!

4 likes, 25 replies

25 Replies

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  • ysaeen81373
    ysaeen81373 Caz-

    Posted

    Hello Caz have you had yr vitamin d checked the symptoms yr telling is brain fog fatigue flu aches and pains just get yr vitamin d checked I had the symptoms to and u can get them symtoms from low vitamin d honestly go docters ND ask them to send u fr bloods n get full blood count n vitamin d. If yr vitamin d is low honestly some of yr symtoms or even all will get better.
    • KPD
      KPD ysaeen81373

      Posted

      Hi Ysaeen81373,

      I just read that your vitamin D levels were off. Mine are, too. Can you tell me what supplement helped with the fatigue for you? I know there are so many out there...just wondering which one you used and how much you take daily. Thanks so much! KPD

    • Caz-
      Caz- ysaeen81373

      Posted

      Hi Ysaeen81373,

      Thanks for your reply.

      Getting a diagnosis has been a long process of elimination, almost 2 years.

      I have been checked for literally everything. I do have a vit D deficiency aswell as a B12 deficiency and low iron 😕

      I have taken the relevant medications prescribed by the doctors for these, and all levels have returned to normal but unfortunately haven't alleviated the symptoms. I'm still taking the supplements daily to keep my levels within normal range, but the doctor and chronic fatigue service I recently attended are both in agreement that these issues have been addressed. Hence having the diagnosis of CFS/ME confirmed.

    • Caz-
      Caz- KPD

      Posted

      Hi KPD,

      I too have low vit D, the GP prescribed 3000 iu vit D supplement daily for 6 months, which did return my levels to normal, but didn't relieve the symptoms. I now take a daily vit D supplement of 2000 iu to keep my levels up.

      The doctor can suggest an initial dose appropriate for your current level.

      Hope that helps sad

    • ysaeen81373
      ysaeen81373 KPD

      Posted

      Hi 2kpd

      My vitamin d levels were down to 27 it went back up to 72 but now it's bk diwn to 52 and getting them symtoms again. I was taking 440,000iu a week for 7 weeks but once my tablets finished I started to take 1,000iu daily but it hasn't helped as my levels gave still gone down. Have you got your bloods checked again as your levels may be down again.

  • Ladyliegh
    Ladyliegh Caz-

    Posted

    There has been great advice posted here, but I want to add just a bit more...

    I too was raising my kids & trying to balance life with CFS. The most difficult thing at first is to realize you can't be the same as you use to be. The things that you have done all your life, the way you have managed & juggled tasks, has to be different now. It is natural to grieve for the life you had before CFS, but it is to your advantage to move on & learn new successful ways to manage life with CFS. The more you stress, the worse it gets. Pushing yourself will only lead to relapse.

    There is an unspoken rule about Mom's,

    When Mom's OK, everyone else is doing good.

    When Mom's not OK it affects everyone negatively.

    You must put yourself first,(very hard for Mom's to do) realize that in doing that you will succeed.

    Be patient with yourself, be proud of what you do. Don't weigh yourself down with guilt, it will cause depression. Do something for you, every day that makes you happy. State of mind is important, going with the flow is better than against the flow.

    One more suggestion, when you cook things for dinner, cook twice as much & freeze the rest. It works great for, chicken soup, lasagna, spaghetti sauce & so on... You will be grateful to take a break from cooking when you are having a bad day.

    I am so sorry this has happened to you, it is a great challenge to learn how to manage life with CFS. But there are a lot of people who can help & a lot of info online. (What I would have given to have a forum or access to info, when I was first sick.)

    I hope this helps you a little...

    • Caz-
      Caz- Ladyliegh

      Posted

      Thanks so much for your reply.

      My husband and GP have been telling me much the same.

      I'm feeling much more positive after discussing this here, and have taken the day off work today to get some much needed rest.

      I've decided I need to start trying to be more proactive and put some kind of plan of action in place.

      I'm going to be contacting work later to discuss a reduction in hours if possible to allow me to manage all my other commitments better, even if only at least until I have received more support and advice from OH.

      I don't want to keep getting signed off as this is not good for my absence record. and isn't very fair on my employer either. Plus when I am signed off I'm not really at home resting, but more stressing out about not being there, which doesn't help either!

      Thanks for all the advice here, I am incredibly grateful smile

    • ysaeen81373
      ysaeen81373 Caz-

      Posted

      Hi Caz I really understand you I honestly get frustrated me with my weakness in my legs and arms. Caz I don't suffer from CFS but I was low vitamin d and I've got a mucale wasting condition that effects me. But when ever I went to Docters that I've got brain fog weak legs and arms breathless and other symptoms docters said it's anxiety it's yr condition but I forced him to send for bloods ND my vitamin d was low it was at 27 it came bk up to.72 but it's bk down to 52 and getting them symtoms again not all but some.

      Caz sometimes us humans want answers from docters but we don't get them and docters at times don't know what they doing. Now I know I'm getting them symtoms but tommrw when I go docter might not take notice. One thing I like doing is talking to someone to feel better.

  • daggers46390
    daggers46390 Caz-

    Posted

    Not read the other replies yet so apologies if I'm going repeating what others are saying. First and foremost I'd recommend trying to get signed off work for afew months and then returning on a phased return.. you need to try get your self to a good baseline and then build your energy from there. If that's not possible for financial reasons etc see if it's possible to drop to 3 days or take some of your workload away.

    Home wise, do your shopping online so you don't have to do it. If you can afford it, get a cleaner/someone to do your ironing. For the kids, let them live if microwave stuff for a few months (it won't harm them). Microwave meals, microwave jacket potatoes etc or see if a relative doesn't mean batch cooking some meals for you every week that you can freeze for them. Encourage the kids to do more things for themselves- get themselves dressed, make their own beds etc. Maybe your older one could help you more/ they might enjoy the extra responsibility- especially if you use a reward chart of something xx

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