Any M.E/CFS parents?

[Rachie1986]

Just that really. Only got mild M.E these days but still struggling a bit and wondered if there was anyone else for advice or just sympathy?

Yep, I'm here :)

A lot better at the moment, DH recently started FT work and I'm actually managing stuff like school runs (10min walk each way) and even taking the DCs to the park which is pretty amazing considering how long it felt totally impossible. I'm working, but only 3x 4hr shifts a week. That's made the biggest difference as I was full time when the illness first got really terrible in 2012.

I'm definitely not out of the woods yet, but I'm really happy I'm making improvements and able to do normal mum stuff IYSWIM? Rather than absolutely everything feeling like a battle.

I also have POTS (postural orthostatic tachycardia syndrome) which makes me dizzy so there are still things I can't do, like washing up as it involves staying upright. Cooking is getting easier but I still have to be careful.

One thing that has really helped is improving my diet, I haven't done anything extreme but just gradually started making better choices particularly reducing processed foods, decreasing (not cutting out!) refined carbs and sugar, increasing protein and good fats and increasing veg etc. I am in no way saying it's a cure obviously but it's definitely making me feel a bit stronger. And I've lost weight too which is great.

I am trying to make sure I walk a bit every day too, I have finally got to the stage where the school run actually energises me (even though I ache still) and I find if I don't leave the house on weekends I feel lethargic and stiff. I might get a pedometer. But of course I have to be super careful not to overdo it.

The biggest worry for me is getting ill with a bug. My immune system is shit (although starting to get better thanks to diet changes, and also I take vitamins now) and as you know a cold to an ME sufferer is never just a cold. If I do get tonsillitis etc it affects my whole body and renders me useless. Thankfully these are becoming more infrequent.

Sorry for the ramble

Hi fuzz,

Great to hear from you, no need to apologise for the ramble! I think I need to look at my diet, it is awful at the moment!! Breastfeeding is leaving me with less energy though so struggling with both energy for healthy choices and motivation to out the biscuits down! I'm doing ok most days energy wise, though surviving more than thriving, but worried about going back to work later in the year. How old are your dc?

Hi rachie and fuzz! Me too. I have a 2yo DD. How old is/are yours, rachie?

I was recently diagnosed with CFS/ME and DH has it as well. He's worse off than me, and has had it for years (since before we met). I've probably actually had it for 6 years, it just took forever to figure out because the Dr said I was fine and that I was obviously much more functional than DH.

I work full time and DH just finished a postgrad degree, while being main childcare for DD. He has pointers to some part time positions now, which he may take up after graduation. One is completely online, so would work out really well for us, as he could stay home with DD during the day and I could look after her in the evening while he works, which is how he did his studying.

I find it a real struggle to get DD out for social interaction. She has swimming, and now gymnastics, lessons once a week each, and I go to a weekend baby/toddler group that meets once a month. But we don't do much else, and neither of us really has energy for things like going to the park. I often feel very substandard, or something, and like I'm not doing for her what I should :(

I know what you mean about worry of illness, fuzz! I got flu this winter, (despite getting the jab!), and was sick for several months. When that happens I just stumble through life only doing the most urgent things at work and barely feeding the family. I hate losing whole seasons like that. Next year, I will insist DH get the jab too. I came down with it after he'd had it for two weeks, after a really stressful few days at work with barely any sleep.

I've told a few people at work about the CFS, and have now asked for a small reduction in my duties, after getting another one added -- it might come out to even or slightly more work, but at least I'm won't be doing both together. Although I still have yet to hear if they have gotten anyone else to take it up, and in the meantime it's still my responsibility.

Oh, it looks like I rambled on too. I guess that says I really did want to just get things out to people!

Oops I totally forgot to come back to this thread sorry rachie - my organisational and memory skills are zilch!

My DCs are 4 and 6. Dreading September when DD will be going to junior and the school run will be twice as long! But hopefully as my stamina is increasing it won't be so bad.

Hi murmur, that's interesting you got ill despite the flu jab. I was deliberating with this issue for months. I know some people who've actually had their ME symptoms get worse after a flu jab because of the way it tricks the immune system. I opted out in the end.

I think the jab did a pretty good job of protecting me living 2 weeks with someone with the flu before I came down with it! It was also milder than normal. I was only very ill for about 2 months, whereas it is typically 3-4 months. I've gotten the flu every year I have not gotten the jab, so it doesn't take much consideration on my part. We're talking over 20 years of correlation here 13 with no jab and flu, and 9 with jab and no flu, then last year... In fact, I can trace my CFS/ME to the flu jab shortage 6 years ago :(

I have noticed a difference in which jab I get. I used to go to a particular private clinic, and usually felt quite bad for several days afterwards. But it was worth it to avoid months of illness. The Boots and the NHS version never bother me. So now I always go to Boots.

Hey, with CFS/ME will I now get it offered on the NHS? Although I might still go to Boots if it means I can get it earlier.

Hi Rachel - theres a few of us over here:

Spoonie thread

Hard, isn't it? I am a lone parent to DS(8), was working til about 6 weeks ago but really think it's not an option any more. Looking into more DLA etc, a mobility scooter. It's all a bit scary.

You shouldn't be offered it in nhs as highly recommended not to if you have ME