How do you cope with recovery?

[Fizzy]

Sixteen months ago, I suddenly developed terrifying symptoms, which were apparently post virus-related infection. After two months of what I can only remember as a living nightmare, I began to make slow but steady progress and it has continued that way to date. Now, I'm so much better, my symptoms are mild and I have quite a few days at a time when I feel almost back to normal.

The "problem" is that I no longer recognise my symptoms as well as I used to and it takes me a while to realise that they've been triggered. Rather than the warning sensation of sheer panic I used to get at the onset of a wave of symptoms, now I tend to feel irritable and frustrated...angry even. I think I become accustomed to not having the worse symptoms and when they do appear, I feel very despondent because I had been able to forget they existed for a short while. In the past, I have read people's comments, stating that they've "lost themselves" and now I can see what they mean. I've forgotten what it felt like to be "me" before the symptoms began but the year after they began is also a blur.

How have you all been affected emotionally by PVF and how do you cope with the recovery process? How long has it taken/is it taking to feel like "you" again and do you have any suggestions to help people like me, who may be going through something that feels like a PVF identity crisis?






edited by Fizzy on 6/9/2011
edited by Fizzy on 6/9/2011
edited by Fizzy on 6/9/2011
<em>edited by Fizzy on 6/9/2011</em>

[marion]

Hi Fizzy, i don't know if this suggestion will help you but i think in your case, the Gupta programme (don't know if you heard of it) could help. He covers a whole section on how to deal with dips and reoccuring symptoms. I am a big fan of the programme tho i am still dealing with Chronic fatigue, I believe that it 'got rid' of my fibromyalgia to a large extent but unforunately i panicked when i got some old symptoms and sleep affected which makes me feel worse during the day. Gupta warns against panicking so u could say i didn't heed his advice properly! I am now using his accelerated programme which he developed recently. I think some of his techniques are powerful esp 'soften and flow' which is all about acceptance of symtoms and not resisting. of course all of this is WAAAY easier said than done and it takes commitment but by the sounds of it you are in good place to really get to grips with it. I am saying this because if you are having some normal days...these are the days when u use the techniques to tell ureself not to react in a negative way to symtoms when they do occur. you telll youself beforehnd that you will accept and let go. I believe this programme has helped me alot. To me its like a manual for ' how to deal with chronic fatigue'. i am delighted to hear you are havin normal days, best of luck with your recovery, i think you have come along way by the sounds ot it. By the way gupta programme is not cheap...140euro...not good at the conversion to pounds! mayb 100pounds? but i think its worth it, regards, Marion.

[Fizzy]

Thank you, Marion. Someone else recommended Gupta&I've seen his name mentioned all over this forum and, a while ago I read his theory on what happpens to the body with PVF/CFS. It sounds like an effective and comprehensive relaxation/coping strategy but, unfortunately, it is a bit pricey for me. I agree completely that maintaining a calm&positive attitude is easier said than done. I think that because my symptoms aren't so defined as they used to be, I let my guard drop...which is a good thing after so many months of being vigilant of every single thing that's going on in my body...but, at the same time, stonger symptoms can catch me off guard.

I'm very pleased to hear that the Gupta program has helped/is helping you so much. Do you now feel more like you used to feel, as a person, or do you think you've changed at all or lost something inside along the way? Another thing I've read, time after time, on this forum is the tendency to become introspective, so I guess we all go through pretty much the same sorts of emotional processes...and it's good to know we're not alone. <img src="images/smilies/smile.gif" border=0 />

[marion]

yes i think everyone changes after an experience with chronic fatigue. I am still in the middle of it but i feel i will be a stronger person and will never take 'normal life' for granted. In saying that, i know 2 people personally who have recovered from cfs and they both said that when u go back to normal life, u start to complain about work etc and forget uve been ill! suppose its just human nature! This has had a major effect on me. Personally, i was always on the go 24/7 (apart from sleep) so i know i cant be the same person again but thats not a bad thing! As long as i will eventually be able to work and socialise the odd time(miss the craic as we say here in ireland) I'll be happy so sometimes cfs comes as a teacher tho i when u are in the middle of it, I think its very very hard to see that. One of the girls who recoverd is a very good friend of mine and she said that she realised as she was recoveing that she wanted to change things about her life. She minds herself alot and cant stay out late etc. However she said she now realises she was just drinking, going to pubs and niteclubs as it was the thing to do so she doesnt mind that she cant go anymore. In fact, shes very happy with a more relaxed pace of life. Now i'm the opposite, i miss coors lite and the pubs so will have to be v careful when i recover not to go too mad..ha ha...anyhow, i suppose it comes down to acceptance of limitations but that doesnt have to mean a boring life....dont know if that answers ure question, prob not! marion

[Fizzy]

Marion, thank you for an inspiring answer...which made me laugh, too! <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" /> I suppose this is a perfect opportunity to replan the future and, as your friend said, to make changes to things you weren't happy with in the first place. I gave up smoking and I hope it will be of long-term benefit to my health, so there's one good change for me. Hee hee, yes, you'll have to be careful when you first go back out on the town..but at least you'll be able to blame the alcohol and not the CFS! <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" />





edited by Fizzy on 6/13/2011
<em>edited by Fizzy on 6/13/2011</em>

[SleeplessHopeful]

Hi Fizzy,

Congrats on quitting smoking. Just wondering, did you feel any health benefits after you quit Smoking?? Also, how did u do it?? I'm trying but keep giving in to it ;((

[Init1972]

SleeplessHopeful - it's great to hear you want to try to give up - I have been smoke free for 15 Months now (since this illness started) and I quit using the local Cessation Clinic at my pharmacy - the reason I coud was that I had a chest infection so the following day I went to pharmacy for my meds and registered - I managed for a week then had a sneaky 10 over 3 days and when the sore throat came on and developed into what I think was Glandular Fever I didn't have any choice BUT to quit as I couldn't swallow or get out of bed and was there for almost 2 months!! I did use my patches though (My partner would stick them on me in the morning before leaving for work lol) and have not had one since <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" />

I do still crave a cigarette now and then but the reduction of Alcohol in my life (practically zero!!) helped too and I know how detrimental to my health they are now (before I was blinkered like EVERY smoker!) but mt Daughter who is 5 was so proud of me and so am I.

It is NOT easy and it was my 3rd attempt at patches and I must say that if I hadn't gotten the viruses I would possibly still smoke now but it can be done and the best advise I got was from my Mother-in-law who told me "You will always crave one daily but just tell yourself that if you are really going to have one then you will have it tomorrow" and by tomorrow the craving was gone and eventually you are out of the habit - but my new "Habit" is the internet lol

Don't be scared to atleast try to give up by cutting down first and applying for the "Quit" pack (on the NHS website I think) and once that has arrived choose a start date and try to stick to it - if you don't manage to quit at your 1st attempt then don't be hard on yourself - most smokers don't quit 1st time and also most quit for some years then start up again out of the blue so I honestly can't say I will never smoke again but I know for now that I am more likely not to start again.

Hope that helps

Lesley <img src="images/smilies/biggrin.gif" border="0" alt="Big Grin" />