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 cured of CFS after the years housebound, by a very good specialist therapist. We did CBT, psychotherapy and very gradual (painfully slow really) graded exercise. Took a year and a half to get to fully well.

Don't lose hope.

*three years housebound

I have been diagnosed for 4 years but have had ME for longer than that.
The diagnosis came only when I was so bad I struggled to go up the stairs or put a load of washing to dry (lifting my arms was just too tiring).

I does get better.
What made the difference for me is to go and see a nutritionist/functional medicine practitioner. It has taken about two years so slow progress but I am so so much better now. Well enough that I am working (part time) and studying for an MSc atvthe same time.
I still need to watch my energy levels closely and I still can’t do as much as I wouod like. But then that’s probably my lesson too. I can’t do everything and be everything to everyone!

Btw I agree with checking vitB12 and vitD.
The comment from my nutritionist was that, in ME/CFS, she wants to see the levels been higher than in the ‘normal’ population as we seem to need more to be well.

Same here. Had to quit work, but managed to retrain although the course took me two years longer than expected. Read all the books & resources available, see GP as needed, vitamins & supplements, rest & manage energy levels. I would have no life at all if it wasn’t for my wonderful family and I’m learning how to change my thinking around that. Hopefully I will be able to return to work one day, albeit part time. But for now I’m learning how to manage this new life.

You are NOT NOT NOT failing your children. They live in a safe, loving home with 2 parents who love them. Is your DH abusive to any of them? do either of you take street drugs? Do you have a different man in your bed every night? Are they being taken into care? If you’ve answered no to all of these and any other scenarios of the same kind then you are a good mother. Children need love. You give them that. You are the only,mother they have so for them this is normality. And most importantly you have given them the greatest gift anyone can - life.

**bringbackthestripes I'm now on thyroxine and metformin and a much higher dose of iron and vit d than nhs would give.

My tsh was fine but he found my t3 and t4 were off (just inside range but not where he wanted them.given my symptoms). Metformin is for PCOS which again NHS said wasnt needed... He felt otherwise.

I genuinely wasnt expecting a difference... and yet here we are

bringbackthestripes Yes of course, no problem

imnotaceleb ahhh I’m already on thyroxine, iron, VitD, B12 and no need for metformin. Glad it is making a difference to you.

QueenStreaky thank you

Thank you all for your help and support. I posted this just to vent. I didn't really think about how much it could change my outlook. It nice to know I'm not alone although I wish none of you had to deal with this. Money is a bit of an issue with being off work but I will try and save some to see a specialist I think. My vit d levels are 'on the low side' apparantly. I asked what that actually meant as my gp said they are at 30 if that means anything to anyone. In going g to go back and ask for stronger supplements than over the counter I think. I'm feeling so so much more positive though so thank you all.

What is the best specialist to see privately do you think? Will have to do one at a time I think!

Just a long shot but have you got a print out of your thyroid results? be worth asking Gp for to see what tests have been done and like others are saying get Vit B12 and Vit D checked too they all need to be in the upper third of the so called "normal" range for you to start feeling in any way better, Also check out health unlocked thyroid website.I was told I had chronic fatigue but have got slowly better on non dessicated thyroxine like you I used to have loads of energy to have it all taken away is I know horrendous, so every avenue is worth exploring.

Huh. Interesting info here. I did get my B12 checked and even pointed out that I was only a few points above the very bottom of the range, but just got back "you're in the normal, no problems". I later found a Mayo site saying something like this was a guide when there is 'no other neurological symptoms', and anything under a good twice my value was of concern with other issues.

they all need to be in the upper third of the so called "normal" range for you to start feeling in any way better
I'm wondering who knows this, and how one might be able to get a physician who would do anything when your numbers are at the lower end of normal? My Vit D is also in normal, but again no where near the upper third. But I've seen the GP, been referred to and dismissed twice from the local specialist fatigue clinic, and am now under care of a specialist nurse but he can't do much other than write letters to my GP, and I'm just exhausted of spending so much time seeing physicians and being dismissed (which takes quite an emotional burden, as they often aren't kind), that I've basically given up - it's made pacing so much harder when I also had to sort out all these appointments and they weren't helping! Does one need to go private? But I worry I'd spend money and energy and it still wouldn't help.

Those who are currently managing their pacing - how do you protect your downtime? I find it extremely difficult. DH always complains I "never want to do anything" - it's not that I don't want to - I often desperately want to, so much I cry about it - just I know that if I do X,Y,Z extra things I won't be able to make DD breakfast tomorrow or get her to school (and DH should understand, as he has CFS/ME too, and for longer and worse than me, but his pattern is do-and-crash, which works with his job and when he had a healthy wife to pick up the pieces during the crashes, but now he doesn't and I can't afford to do-and-crash too, but he can't seem to acknowledge that I need to manage things differently). And at work I've got informal accommodations, and my line manager is understanding, but dealing with other colleagues particularly those outside my unit is tough - I remember a few months ago telling someone I could not meet on a range of days (because I was going to completely shut off and not do any work for a few days) and his reply was "not even via Skype"? I really didn't feel like sharing my personal health information with this random. And one colleague I did share that I had CFS/ME when recently diagnosed told me she "didn't believe in" CFS, which made me quite scared of sharing with anyone. So, how do you protect your pacing, without feeling like everyone always thinks your taking the piss or are uninterested?

murmuration For me, 'protecting my pacing' meant growing a thick skin and not letting other people influence my need to rest, and (sorry) not working. I really wasn't well enough to get there and function and be a parent when I got home again so I had to quit very early on in my illness. It was the best thing I could have done, health-wise, because it allowed me space to manage my ME without daily commitments (although I still had my son, obviously). I know that's not always possible for everyone but the hard truth is that if you DO have to continue working and expending energy you don't have, it will take longer to recover and it might not ever happen.

I found it was easiest to pace when I had a structure to my day. The course I did taught us to do small portions of activity, interspersed with periods of rest - even when were feeling fairly well. This bit was crucial, otherwise you get into a boom and bust situation like your husbands, at which point you can pretty much give up on any chance of a full recovery because you're on that never-ending treadmill without a chance of getting off. One life-changing lesson was to always stop and rest before you feel tired. I still do that now even though I'm fully recovered, because it just makes sense for physical and mental health.

I think you're right not to share with people who don't need to know, so don't change that. Keep it to yourself and that's one fewer thing to stress about - and stress is a key feature in managing ME/CFS.

murmur unfortunately some Dr's don't know this and even Endocrinologists! however there is info out there if you go online. Many have to self medicate (myself included) Go to thyroid Uk health unlocked and have a look at so many people with similar issues to the ones you are describing Sadly we cannot wait for Dr's to make us better.

CFsisdrivingmecrazy with the VitD of 30 it does depend on your labs Values as they tend to vary from lab to lab. Mine level was 33 in 2016 and the report says “30-50 may be inadequate in some people” and I wasn’t given a prescription at that time, whereas the lab that tests bloods for patients in the area that I work in deems less than 50 to be low and they get a prescription.

My prescribed dose since June 2018 is 2 x tablets of these every day

www.pharmacy2u.co.uk/fultium-d3-800-iu-capsules-p11962.html

This vitamin D prescription is from my endocrinologist (but seems equivalent is available online) and my gp said that people dont usually have that high a dose but my levels were still “borderline” and so I have started adding this

betteryou.com/dlux3000?gclid=EAIaIQobChMI07m6kvL03gIVDLTtCh1S2ACPEAQYASABEgJoFPD_BwE

Find out your Vitamin B12 levels when you go in, I hope the dr is supportive when you go.

Thanks Queen and away. Yeah, unfortunately I do need to work - DH can't support the family, and I've actually got a pretty good career (if I can keep it going). It distresses me that I can see a slow decline - I can do less now than I could do last year, and that was less than the year before, etc. My current hope is that the decline is slow enough I can get promoted soon enough to be able to go part time and still support us. I think I could improve with part time work.

Resting before being tired - ah, if I was ever not tired... But, I do try to do something like this, by planning my afternoon sleeps and taking them whether or not I feel "sleepy". This is one of the things that causes the most friction, though, as it is hard to defend needing to rest for the vague "future". At least DH accepts that I do this when there's nothing else on (and he then has to look after DD), but doesn't seem to quite understand that the reason I can't spend all weekend doing XYZ is that I need my nap.

bringback - interesting! I've started taking vitamin D and B12 supplements myself, and I feel like it helps. I take 4000IU vitamin D and 1000ug B12. I just take pills, though - I wasn't up to trying to find injections. But it could all be in my head. And especially the B12 test is so expensive they're not going to do it again just to check (and not the vitamin D because I was okay before anyway, and that was one that required low calcium to trigger, too).

I used to nap that way too. A proper sleep, in bed with the curtains closed, every afternoon and timed for an hour. That was what I'd worked out was my optimum - anything more and I'd be more woozy and it didn't benefit me, but an hour of proper sleep and I could get through the rest of the day. It's different for everyone so it's important to find your own way. That's where the thick skin comes into it - ignore anyone who says you shouldn't be napping in the afternoon because actually you need it. Fingers in ears, la-la-la .

Thanks, it's taken a long time to get to this point of happiness and acceptance. I'm extremely lucky in DPs support, and the fact that when I moved in he was used to cooking etc for himself so happy to keep that up, and little bits of help I give are appreciated.

Pacing wise I have got into a routine of sleeping roughly 12-12, broken by a cup of tea and a hello when DP gets up, sometimes sleeping a little longer or shorter and occasionally zonking out on the sofa in the afternoon too if I'm having a really bad day or have overdone things. This means I can go to a weekly craft group at 2 pm, and can be at my best when DP is home in the evening. I've been very tired still since going to the bird of prey centre on Sunday (I woke up at 10 am, and was put in the cold in a new place etc etc, which all used a lot of power) hence not writing anything here yesterday, but apart from following DP around the supermarket on the scooter last night I don't have to go anywhere until craft group on Thursday, and then a Christmas craft thing on saturday night. That's how my pacing works - I know what I can do, what I can't do, and what I can do if I must/want to but will suffer for afterwards, and I space things out and plan accordingly. It doesn't always work, and i can get thumping headaches for days if I get too tired, but on the most part I manage my little bit of energy ok, and the rest of the general feeling ill is back ground noise most of the time as I've had it so long.

The most important thing for me is to be relaxed. If I get stressed or anxious I feel very rough very quickly. Equally though unfortunately being happy and relaxed hasn't magically made me recover, it's just made being ill easier and life more pleasant.

I take the supplements recommended by Dr Myhill in her book/website, ribose and a few others, and i do feel they make a difference. I was interested too learn from my physio that they are similar tp the supplements used to treat kids with mitochondrial diseases.

A friend has just posted This on FB, about setting limitations when you have a chronic illness. Worth a read.

That's a super article Queen. I do things in a very similar way to how she describes.

I like it too. The key really is self-awareness and honesty about how the condition affects you and what works best for you. Until we get to that point and are prepared to take appropriate action, nothing will really help.

Another thing though - we were advised to save some of our energy for fun things, and not spend it all on responsibility and necessities. That way depression lies - you feel like all you're doing is work and it quickly gets us down. Find fun things, even if (like the article suggests, and I think someone on this thread has mentioned) having a day off before and after doing something 'big'. We occasionally need those big things to keep our heads in good order. Finding a balance in all areas of life is really important.

Queen I’m all for napping. I wouldn’t be able to make a meal without my afternoon snooze

murmuration who cares if it’s placebo affect, if you are feeling better in any way-no matter what the reason-then it’s all good! My calcium is absolutely fine incidentally. Who said the B12 test is expensive? The GP? Is private an option? As far as I’m aware only VitD test is expensive, B12 is part of routine screening. At least at our lab anyway.
www.cerascreen.co.uk/products/vitamin-b12-test?gclid=EAIaIQobChMI6rzc1b713gIVLbXtCh2gaw8qEAAYAyAAEgLvGvD_BwE

Sarge I have started taking D ribose and l-carnitine and I was asking DH if he thought I seemed a little better/napping less/crying less but that’s along with self injecting extra b12 . He says he thinks so-yay!

I’ve also ordered amino acids as I have just read that CFS patients are deficient but not tried them yet. I’ve decided I need to see if the other supplements work yet before adding something else in then not knowing which one is helping. It’s all very expensive

stripes I haven't had a daytime nap for years now. I rather miss it . But it's SO great being well again. I really never thought it would happen, and I'm making the most of it now that I can.

Queen it’s fantastic to hear there is hope of a recovery