Has anyone on here gotten better? How?
Posted , 17 users are following.
Thank you all for everything you share. This site has meant I great deal to me, since I have found through it that there are other people who understand where I am coming from. I thank God for this resource.
I am almost 50 and became seriously ill with CFS exactly two years ago. This whole time I have been beleiving that there is NO WAY that this can be my life. In other words, I have definitely not accepted CFS as an ongoing part of my life. Friends and family don't help since they say things that indicate "So, when are you going to get better". When I have made myself face a reality of living this way for the next 25 years, I have just crumpled or been angry. So.............. I have tried CFS specialists who claim to be able to cure it. This has been at great financial cost for my family, of course. I'm in the US, by the way. I have received some help, but no cure.
I'm just now barely beginning to accept that maybe I can make living with CFS my new life. Tears start coming, even as I write that.. I don't want this for my new life. I know that this will sound horrible to some people who don't understand, but, since I'm not scared of death, I would rather die than spend the next 25 years physically miserable and not much of a contributor. But , maybe I have to accept it, and figure out how I can contribute just like I am.
I have a question, please, has anyone out there been cured? Also, do you know people who have been cured? Have specialists helped with cures? Should I truly just accept? And If I do have to accept living like this, then I want lots of purpose in my life like I use to have. How have you all found purpose with a body that doesn't function well?
I hope I don't sound like a basket case!
1 like, 87 replies
Patrickgeoffrey dawn94288
Posted
I always get better with rest,my problems started at 17 I am 58 now, have had 3 relapses in the the last 15 years my longest was 6 years,I came down with the flu in January of this year that triggered another relapse, I am struggling now to even walk 100 meters,there is no proven treatment or cure,just rest and don't push yourself, I always get better in time,it took me years to realize the flu was my trigger though,there is a long list or viruses and bacterial infections that are triggers
dawn94288 Patrickgeoffrey
Posted
How much rest would it take? What do you mean by better? I have a couple of times had like 4 days in a row when I wasn't sick and I was almost normal, but that has been about the extent of my being better, and I quit my part-time job
Patrickgeoffrey dawn94288
Posted
One to two years of rest for me,the last relapse I didn't work for a tear and spent most if the time at home only went if I had to, groceries things like that, I did not send a lot of time in bed as I do sleep well. If you walk,walk slowly stop and rest,just take it easy,right now I struggle to walk 100 meters,this is my 3 Rd relapse in 15 years, I was almost normal for two years in between with no real issues,no problems walking,but then I came down with the flu in January and have be doing badly since then
dawn94288 Patrickgeoffrey
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phil50852 dawn94288
Posted
Some inspirational posts on here for sure. I've just been diagnosed, after some years of the symptoms they got much worse this year and at the moment I'm about 12 weeks off work with no real improvement. But you know what? I'm not letting it get me down. I already worked out that stress, negativity, worrying etc - none of that helps me feel better, it makes me feel worse. I may not ever get to walk miles again but I'm not dismissing it altogether. I am very hopeful the symptoms (exhaustion and brain fog) will calm down a bit over time and I will be able to do more - I've already had a couple of periods where I've been able to get out for a while. The trick is not to overdo things as that sets you back (something else I'm getting used to) and lie down if you need to lie down.
Being positive isn't being delusional - its trying to make the best of what you have, being thankful for what you have. I'm 52 and can easily feel resentful that I'm not active right now - but you know what? There are people half my age and less with this condition being denied all the opportunities I had. I know of 1 guy with a 15 year old daughter who can't get out of bed and is in constant pain. Imagine how terrifying and confusing that must be to a kid that age.
There are also people who died younger than me. I am lucky to still be here and able to enjoy even simple things. I don't want to sound evangelical but this experience has taught me even more to be mindful and appreciate what's around me. And I'm convinced that positivity will help me alleviate the worst of my symptoms over time.
I'm not happy clappy every day, far from it - it can be a struggle to stay positive, but at least if you keep that in mind, its relatively easy to get back to.
elaine62759 phil50852
Posted
This is definitely the best way to think about things. I've had M.E. for 21 years and used to get so frustrated because I couldn't do all the things I wanted to do and it has taken me a long time to come to terms with my illness but you get to realise that there are people with all sorts of illnesses and problems of all sorts of ages so having this illness isn't the end of the world. There are worse things that you could have. I now accept that I am restricted with the things I can do and have good days and bad days but can still have a reasonable quality of life. It's not the life I would have chosen but who does have a perfect life??!! I have learned to appreciate more the simpler things in life and can still be happy from doing things I enjoy - my life is just different from before. Even something simple like managing a walk on a nice sunny day or managed to meet up with a friend on a good day can give you a boost. On a bad day you can get pleasure from watching a favourite TV programme, eating good food, talking to a friend on the phone, stroking a dog, doing a hobby. Life doesn't have to be busy to make you happy!!
dawn94288 elaine62759
Posted
Well put. And I am finding that sometimes you can even make a difference in other's lives like you just did!
jackie00198 elaine62759
Posted
peta99573 jackie00198
Posted
I am still angry and resentful righ now because i have had a three week flare up, but working on being positive instead because the alternative is so corrosive. at the moment, it is taking a lot of effort, but you know, when I'm not being so bloody minded, I can enjoy little things and look forward to doing more.
jackie00198 peta99573
Posted
Peta--This is such an awful illness, I think it's only normal to feel resentful and angry at times. For instance, this morning my husband called me from Whidby Island, where he's attending a music festival. I used to go with him to this festival every year before I had a relapse. I felt very sad when I got off the phone with him.
dawn94288 jackie00198
Posted
elaine62759 dawn94288
Posted
Have you tried CBT or counselling? I had both and found they really helped me come to terms with my illness. They don't help you physically but can really help you to maintain a positive attitude.
madge19860 elaine62759
Posted
Hi Elaine, What is CBT? Counseling is expensive here (U.S.). Wish we had a single payer health care system like so many other countries do. People here can lose all their savings if they get a serious illness. If the right candidate becomes president here, she will improve our health care. But we also have a crazy guy running against her. Heaven help us if he wins.
Did you say you live in Scotland, or am I confusing you with someone else here? I'll probably never be able to visit Scotland, but I've been told it's a lovely country.
dawn94288 elaine62759
Posted
I have thought a lot about getting counseling for those with chronic illness. I found a counselor that was listed as being someone you could see online who fit our insurance companycriteria (I'm in the U.S.) But it turned out that the info was incorrect and I need to decide if I am going to get up my energy/gumption to try to find someone who fits all of the insurance criteria etc. again.
jackie00198 dawn94288
Posted
elaine62759 madge19860
Posted
Hi Madge, yes I stay in Scotland. There is nice scenery here but the weather in not great! CBT is cognitive behavioural therapy which is a therapy which challenges your thought process. For example instead of thinking 'I feel awful today, I can"t do anything' you could think 'I'm exhausted today because I did too much yesterday. If I rest today I might be able to do more tomorrow'. Don't know if it's available in the States but you might be able to do an online course or get a book about it. It's a shame you have to pay for everything over there. I'd always wanted to go to the US but like you won't have the energy now!!