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 agree. Gives hope to us all. I'm so unsure about what my future holds. I can't afford to not work but there is absolutely no way I am well enough. Also the thought of giving up my career which I had got so far in such a short space of time, is utterly heart wrenching.

Can I add to the ‘yes you can recover’ list?

Whilst I do know I’m not 100%, and I’m still fearful I will crash, I am also able to work (part time) and do some study at Uni.
Together they add to at least a full time job. And I’m coping.
I don't sleep during the day any more. I can go out etc....

It will come. For me the keys to recovery are

• pacing and not overexherting myself
• nutrition (diet and supplements)
• relaxation (yoga, acupuncture, meditation and choosing thenmake my life less stressful)

Thanks so much for the positive stories! It does give hope.

bringback - GP only did B12 when the neurologist ordered it. I'm so exhausted of everything.

Thats a great article queen.

Really worried about upcoming weeks - two of DD's activities are having once-every-two-years competitions/shows this weekend, one each day, and I definitely need to go. Then I have my volunteer committment next weekend. I've already talked to DH that I'm going to lie down mostly this weekend when not going out for DD, and maybe we'll just get takeaway to warm up all weekend. But I can't book time off work next week, and we're hitting a pretty full on period all the way to Christmas. I guess I could skip volunteering, but I hate leaving out the extras that I actually like just to work.

I would really recommend counselling. I don’t know if you can find a specialist in CFS but just the trauma in going from living 100 miles an hour to being virtually housebound is so hard to cope with. I think to learn to accept that (for a period of time while still hoping for recovery in the future) is important and if you get a good counsellor that could be so helpful in your recovery. And dealing with stress in the future as well as the financial stress now.

That’s interesting murmuration
Before getting diagnosed, my GP said they have to eliminate a few possibilities and checking vitB12 was one of them (as was iron levels, inflamatoryjarkers etc...). No vitD though.
I wouod have thought it was standard to have vitB12 checked before getting a diagnosis of ME

So I'm awake. Arghhh. How is it I'm so tired yet I'm awake. I slept all day today which is probably why. I'm getting increasingly bored of my life. Any wise tips on how to keep myself occupied in the time I am awake that's meaningful but doesn't exhaust me completely? I miss work so much. I never thought I'd say that!

Having a bad time myself. Been diagnosed with Cfs for five years. It's taken away everything from career to relationships. But this a few months ago I got a virus and it's so bad I can't even watch tele much. Simple things I want to do is be able to go out for dinnet, go for a walk somewhere nice, wash hair easily. Life's about the simple things and can't even do them. This xmas I would love to go out xmas shopping and be with family xmas day. I'll be in bed. Normally I'm really positive but road works outside my house means life is unbearable and I have to sleep at my mums. Knackering.

I've had ME over 20 years and currently mostly housebound and using mobility scooter or wheelchair outside of the house.

I do crafts, writing, reading, have Netflix, colouring and a lot of Facebooking, which is where most of my friends are. I do really need to have goals or a sense of purpose, so crafts and writing help with that.

Going back to vitamins, vitamin D is best around 200nmol for us with chronic illness. GPs have very little knowledge of vitamins and often don't notice lowish levels and tell you to use far too low supplements. I take 5,000 a day to keep my level the same. I also take magnesium and vitamin K2 to support the vitamin D. Great Facebook group for support www.facebook.com/groups/458769434286147/

Also vitamin B12, I'm injecting it and finding it helpful. You do need a level much better than deficient, over 500 at least. Good Facebook group www.facebook.com/groups/PAB12DSupportGroup/

Low vitamins, iron, D and B12 especially can give symptoms very similar to ME, and deficiencies will drag down your overall health, so it really does help to keep the levels optimum. You can get a print out of blood tests from gp and Google or join Facebook groups to find out about the levels and how to best treat them if they are low. Drs often give the wrong advice. Mine wouldn't give me b12 and it's helped me so much.

There's also this Facebook group for parents with ME www.facebook.com/groups/mecfsparents/

OP, how about some small crafting? I often recline and do crafting, with a tray on my lap. A ME-housebound friend was the one who introduced me to it, actually! We do bead work, and there is also things like lace-making, knitting, crochet. (I'd actually love to learn crochet, but I don't really need another thing to do)

I also understand ME comes with sleep disturbance - DH has this issue a lot. I've done a lot of sleep-hygiene stuff to combat this in myself, but even a little slip up and everything goes wrong again.

EtVoila - I'm not sure when the ME diagnosis came in precisely, actually. It may have been after the B12. I think our GP must have a lot of restrictions, as all he could do was the 'standard' screen and he sent me to the fatigue clinic specifically because they could do more tests (and then they just did the standard screen again and told me I was depressed ).

And, OP, I'd second the note above about looking into help for your mental health. Being unable to do what you want can really hit you hard, and cause depression, and then there is the danger that HCP's reverse the causation effects ("if only you weren't depressed, you could..."). I put in a major effort to increase my happiness - now no one can claim I'm depressed! Angry, but not depressed. I meditate and practice daily gratitude, which I think are the biggest things that have helped.

CFS I was taught that too much sleep is as bad as not enough. It was recommended that we establish a sleep and rest pattern (we did an exercise on rest and activity to work it out), and sleep at set times for a designated amount of time. Sleeping for long periods just ends up making us lethargic and unmotivated. We were taught to plan our days out, with time set aside for rest, different degrees of activity, and sleep. The planning was really important otherwise you're just winging it.

EtVoila Well done - keep up the good work! But take care too - I had a couple of false alarm periods when I thought I was recovered but eventually relapsed. For me, the trick was to keep adding activity very gradually but always with a buffer so that I had space to recover if I needed it. I didn't admit to myself I was well until I'd been very active with no repercussions for eighteen months. It's now about three years so I'm pretty sure it's all in the past for me.

You see the ‘too much sleep’ has never been experience. I couod sleep for 3 hours in the afternoon and then 12+ Hours at night.

But then I’m also aware that the inability of sleeping at night can be part of the S&S of ME and I was very lucky not to have that.

Queen I fully agree with you! And a relapse is my very big fear. I’m quite careful with that and I’ve learnt to go back to basics when I need to (and leaving H deal wth everything wo feeling guilty).
But I’m find8ng interesting that you’ve picked up on that. This tells me I’m probably doing too much too soon and it’s obvious to everyone bar me! I’ll have to be very careful in the next 18 months.

Im really struggling at the moment. Im looli ng at a minimum wage job 5 hours a week and feeling so overwhelmingly rubbish that I cant manage the pace of a professional job anymore. Grrr.

QueenStreaky - if possible, please could you give some details about the course you went on? Was it via NHS or was it privately-run? I’m struggling to find support at the moment and would really appreciate recommendations. I completely understand if you’re not comfortable with posting the information though. Thanks!

Et Voila I think I've mentioned that one important lesson was to never push to the point of exhaustion, and the exercise was to monitor a week's activity to get a better understanding of how different kinds of activity affected us. None of us had fully understood the impacts until we did this, which showed that we often think we're doing better than we are but the idea was to never get too tired. We learned that we could actually do more by doing less - we had more energy and were therefore more productive, but it was quite counter-intuitive and difficult to get a brain-fogged head around at first. But I think this is why the course was effective in the way it was run - a full year of sessions, starting off weekly, then monthly, and tapering off towards the end when we learned how to self-monitor.

Furries PM me an email address and I'll be happy to send you the details of the course. It was in the north east and I don't think they run it any more (budget cuts, I expect) but it's worth making enquiries in case there's something similar where you are.

@QueenStreaky
It’s so encouraging to hear your story. Many thanks for posting.

Hiya, I am diagnosed as having ME but have several other neurological conditions running along with it.

Some thoughts if you have the energy to do a bit of further reading but also adding links so that this might help others as well.

Your children are “very young” - entertaining them when needed with as little energy as possible - www.babycenter.com/0_40-ways-to-entertain-your-kids-while-lying-down_10350158.bc

thehealthsessions.com/30-ways-to-entertain-an-active-toddler-when-youre-chronically-ill/

thehealthsessions.com/parenting-with-chronic-illness-how-to-take-care-of-your-baby-and-yourself/#more-1639

Loads of info on this site including an e-course if that's something which takes your interest - www.cfidsselfhelp.org/library or this one for info www.verywellhealth.com/fibromyalgia-and-chronic-fatigue-4014724

Adapt this list to whatever suits best for you - thehealthsessions.com/28-fun-things-to-do-when-youre-bored-and-sick-at-home/

I went on a local arthritis group course and they used this book as a guide www.amazon.co.uk/gp/product/1936693771/ref=ox_sc_act_title_1?smid=A3P5ROKL5A1OLE&psc=1&tag=mumsnetforum-21

As you are currently working (although signed off) - thehealthsessions.com/how-to-get-through-your-workday-when-you-feel-exhausted/

About getting things done around the home - thehealthsessions.com/getting-things-done-with-chronic-illness/ and thehealthsessions.com/housekeeping-hacks/

Pacing and how to best manage your energy - thehealthsessions.com/pacing/

If you felt up to doing some exercise, this is entirely up to you and by no means a suggestion that its a cure, it's not (I don’t want anyone to pick me up as saying do some exercises and voila cured) – yoga for cfs - thehealthsessions.com/how-to-start-doing-yoga-in-bed/ so basically some stretches

Things NOT to do - thehealthsessions.com/to-dont-list-for-spoonies/

How to make a healthy dinner when you are tired - thehealthsessions.com/how-to-effortlessly-make-a-healthy-dinner-when-youre-tired/

Recharging your batteries - thehealthsessions.com/mindful-micro-breaks-how-to-recharge-yourself-within-minutes/#more-1371

Also in my own case, my Vit D was 9 so was very low, I spent 18 months on high-level supplementation and am now on a maintenance daily dose and will be long term. I was told the right level was approx 75 so that might give you some indication of things. {flowers} for you.

I used to be at 100 miles an hour before ME, then over the space of 6 months, I literally went to 0. I was advised wrongly to push thru it

I had 3 separate viral illnesses to start with plus one bacterial so 4 infections kicking me at once, had to defer my university place due to illness (I wouldn't have been able to do clinical), 8 weeks of the most intense stress of my life, one car accident, 1 neck and back injury, A sudden withdrawal off antidepressants due to the stressful situation. (the irony is not lost on me re this) Lost 2 family members, had a mini mh breakdown and that 6 months changed a lot for me.

The psych had advised "pushing myself", so I did and made things far worse. A year later I changed GPs and the new one was appaled when he looked at how I was physically and that I had been following wrong advice.

Break absolutely everything down, do a bit, rest for the same amount of time, change from physical to mental jobs, so physical 5 mins folding clothes. rest, mental 5 mins making a list of what needs to be done right now, rest, (clean dishes, clean clothes/bedding shopping list), what can wait list, rest, (bins, lifting/shifting) longer-term list, so rest between each part, so set alarm on phone and don't do anything for a couple of mins -

its harder than it sounds www.donothingfor2minutes.com/

Apologies about all the links but its my easiest way of explaining things

smurfy wow, lots of useful links. I will slowly work my way through them. Thanks for sharing.

Looks like some good stuff there Smurfy. I'll copy that list for passing on, if that's ok.

Thanks so much for the advice. I love my children dearly but I think this is one of my biggest issues as they are so full on. I will read through the links and carefully plan out a little more.

Have you tried reducing gluten from your diet? My line manager was diagnosed with cfs around a year ago. She was off work for many months with phased return for more weeks. Cutting out gluten has (in her words) made her able to live again.

I have a friend who treated her ME with dietary changes. She saw someone on Harley Street who tested for food sensitivities and prescribed a diet that started with all the dodgy foods removed and very gradually reintroduced. It took a couple of years to see lasting changes but it has worked. She's now fit as a fiddle, works and has a child with SN who's a bit of a handful but my friend manages ok, as long as she's sensible about activity and diet. She's aware though that she hasn't recovered, and that's why she needs to still be careful.

I do mostly eat GF and I think I feel better when I cut it out but admit it is hard to always resist a slab of cake. I will make more of an effort if you have both known people it definitely helped.

It might be worth finding a route to proper testing, just so you're sure of what you're working with. I would expect this sort of thing is more effective when it's properly monitored by someone who knows, rather than self-directed. And regular testing would be useful too.

My experience is that the best testing you can do is to cut things out, see how you feel and then decide if it’s worth it or not.

I am diary free because eating dairy meant the achyness in my muscles got much worse each time I ate some. It took me a long time to cut it out completely as I absolutely loved cheese but so worth it.
Gluten/wheat seems to be an issue when I eat too much of it. So I can cope with small amount from time to time but not a dish of crepes for example.

The other thing that helped a lot is omega 3s for their anti inflammatory effect.

And yoga. I didn’t realise how much difference it was making to me until I had to stop my weekly session and my energy level just crumbled. Yoga is my switching off/relaxing time with added meditation.

It's very individual, isn't it? We'll all have different approaches and different things that will work, but not for others.

I tried yoga about three years ago and it was bloody awful - I'd spent sixteen years in constant pain but found myself on the road to recovery and feeling well again. Then I started yoga and all it did for me was bring the pain back, and this was a class for over-50s with existing health issues. True, I might have found another class that was more suitable but I didn't feel like putting myself through more of that till I found it, iykwim.

The best exercises for me were swimming, Wii Fit and eventually, hiking. Took me years to build up stamina and good health, and I always had to have a safety zone to come back to when things went bad, but gradual increase does work. I reckon GET has a bad press because it tends to be done too quickly when under a therapist, at their pace rather than at the patient's, and that's not an effective approach.

I take Omega oils too, a probiotic, CoQ10, and a multivitamin. I think I'm ready to trial no CoQ10 because it's so expensive. We'll see how that goes.