ME/CFS parent feeling down

Dear Julie 

my hubby has CFS. And the thing that upsets me is seeing him suffer and not be able to do things . It's not a terrible illness for me to live with I don't have to feed him or nurse him . I can still enjoy my life but I just hate seeing him unable to do what he would like to do. 

I am sure your family feel the same. Your daughter still enjoys running but wishes you could do it with her . Your not ruining her life . She just loves you and feels for you . 

But m.e /CFS does have a recovery rate and once you recover you can make up for all the stuff you can't do . And all this will be a distant memory . We have several friends who have fully recovered from m.e. And who don't want to talk about it. Because they want to enjoy life and forget the nightmare .

my hubby is beginning to recover and it's a kind of momentum as you start to pick up you get positive , get adrenalin, get energy , recover more feel tired rest and actually feel better and so on. It's kind of self perpetuating .

Just have hope that you will run again , but right now it's rest rest rest till your body says ok I'm ready I've healed ..

feel for you 

Sally 

hi julie, 

l can so relate to your feeling, l started with severe health problems following birth of my second son, one of symptoms was tiredness fatigue, went from being a healthy active person, grew up in semi rural area and walked miles, clambered over fences, ran, jumped, then all gone overnight really, like ageing and becoming semi invalid much of time. Unbelievably frustrating depressing, more so when young, l started 33yrs, sorry for those who get serious health probs younger.  l was lucky in having supportive partner, thought felt guilty at affect on him, but most of all on my sons as they grew up, felt a hopeless mum at times, it does hurt, we all missed out on things, but made the most  of my best times, not active, but out in car on adventure,s, bought a caravan to set off on spec, even sharing the bed doing shadow stories on wall, we just do the best we can. At least we know our kids arent abused or neglected practically or emotionally, as many kids are.  l also forget appt, wrong days, get diaries and forget to look in. Took many years to get diagnosis for my ic and immune problems, treatment did help, and l have been better over many years, by which time my sons adults, now living their own lives, theyve careers, homes, partners, decent humans and happy.  l regret the many years of missing out for all of us,  but cant do anything about it now, but l have improved, though not that fit and active, still get very tired, but improved, though  been dipping again recently, maybe getting older affects. Going for blood tests this aft, remembering it as well.  My sons  just think l,m eccentric, could put it worse.  l also indulge in chocolate, toblerone yummy, good youve still got a sense of humour, best wishes.

We had a camper van, touring caravan, then a static at coast, booking anything difficult, not knowing how your going to be.  So it was a case of the weathers good, l,m not bad and away we,d go, picnics at the ready, be it for a day or a few, kids loved it, as l,m sure yours do, we all need a change of surroundings. One of the best parts of having kids is being able to do kids things again yourself, as much as your able.  l,m wondering if you feel better being in the sea air, l personally think pollution in urban area,s aggrevates, for me anyway, where l live its a very congested polluted area in a valley,  today being poor conditions, even my ears have been aching with bad tinnitus, with rhinitus now perennial. Its supposed to get fresher air after the storm, and l use an air purifier in living room to keep air cleaner, but  coastal air surely must be better.  Enjoy your kids as much as your able, help keep us going also. But what a lot of travelling daily for you.   You,ll need some chocolate after that.  Take care

My eldest sons best friends lived in Addingham yorks, the husband had chronic health probs, r athritus, heart probs, he,d also had mouth cancer, bit of a wreck really. Near ten years ago they moved family to Hunstanton, he got a job at Earles, handyman, his health improved, a few month later my son joined them in a flat share  with their daughter in Kingslyn, , they all love it down there. l went down to visit a few times, really liked Hunstanton, nice size, we went out on boat to watch seals on sandbanks, met up with Vin, he looked so well with the sea air, we used to call him beatlejuice up here, so pale,down there its Captain birdseye, with his tan.  My son now works for Kings Lynn council, none of them would leave the area, definetly healthier, even Kings Lyn,  But know what you mean about packing up, same with house moving, with chronic health probs its a mountain to climb, l moved about 12yr ago, nearly finished me off. Theyve a lovely chalet park down there, further on from Earles,  so cant blame my son for wanting to stay there, the odd visits to me. Guess youve retired, feeling shattered myself today, terrible smog all day here, not good. Improving Sunday they say. We try to make the best of it. l,d like to have wings in the next life. x