Need help with pacing

[hopeful1]

I got PVFS after swine flu in June 2011. Though I had improved appro. 50 % by end of Aug, I went back to work and pushed through fatigue and collapsing at work for 1 month( bad choice but I badly wanted to feel I am normal). I became worse similar to beginning of my illness. Then I had to quit job and slowly I started improving and by Nov, I felt the same improvement as end of August. And in Dec, beginning to get even better, but had severe relapse( due to overexertion and 2 colds back to back which took me 1 month to improve. Now I am back to where I was in August end.It seems like my body wants and is working to recover, but I am not letting it. This time, I want to keep on improving to recovery.
I need help with pacing. It's very hard to do with 2 small children to take care. How do you do it appropriately? Please help. Thanks,

[rm1]

I am no expert but i would say put yourself first and stay within the limits of what you do on a normal day. This illness must be treated with respect if you think you are getting better that is the time to remind yourself not to over exert otherwise you end up relapsing.

[hopeful1]

Thank you very much for your reply. God is blessing me and healing my body and I should respect that more. I am keen on following your advise and will update my progress. Wish you all a speedy recovery.

[S!mon20]

My doctor seems to think that pacing or 'graded exercise' is the key to getting better.
I've found that if I've done too much over a few days, even if it's just stuff like cooking or going to the newsagent, I can relapse for about 2 to 3 weeks.

Luckily I had a fairly 'good' few weeks over Christmas and was able to enjoy myself - but I think I've relapsed since then from doing too much - so I still try to get washed and dressed every morning, but do as little as possible so my body's not overworking.

For energy, I've tried Berocca - the effervescent tablets - that helped me really well, as well as Co-enzyme Q10 and Vitamin D3, but I've stopped these for a month or so just to completely drain my system of all these supplements I keep loading myself with! But I definitely think Berocca's worth a try - especially first thing in the morning.

Simon

[isis25]

Hi Hopeful,

Pacing is really hard so don't beat yourself up about it. Have you spoken to your GP to ask for a referral to a local ME/CFS clinic? Folllowing the NICE guidelines for CFS your GP should be referring between 4 and 6 months of having PVF. If you can get this they'll give you all the information you need to try to self manage including pacing.

For now, you need to try to find your baseline, which is what you can do even on a bad day. So you may be able to wash up for 5 mins, or be on the computer for 30 mins, or read for 10 mins, speak on the phone for 15 mins etc etc etc. Make a list of all of these and STICK to them even on a good day. Gradually increase these no more than 20% until you can stabilise your symptoms and fatigue, then increase again using the same principles.

Try to keep a diary and remember that over exertion will sometimes not show up to 72 hours later. Put rest periods in between your activities e.g. follow your baselines then rest before doing another activity. It is difficult to get used to and with 2 small children I appreciate it will be hard to stick to. Try to put some time in your day where you can do a little bit of relaxation (you can get guided meditation or relaxation from you tube or apps if you have an android phone).

Hope that helps
Ang
x

[hopeful1]

Thank you very much Simon and Ang. May God heal you and all of us to complete recovery at the earliest.

[Steve jones]

Alot of the guys have picked up pedometers and are keeping track of there steps, i think you`ll just learn when youve reached your limit. Take it slow and listen to your body.

[sarah84]

Steve,

I find my pedometer helpful because with kids around it's not always possible to listen as closely to my body as I would like. Yesterday evening I was completely exhausted and when I looked at my pedometer I had done over 4800 steps. I still don't really know how I managed to do so many, I just did the usual school run and then stayed in the house and garden all day. I have been trying to limit myself to around 3000 steps and I think a combination of that limit and lying in the sun had led to improvements for me. Today, unsurprisingly, I'm not great, but because of my pedometer data I'm not suffering mentally. I can clearly see why I've gone backwards, and I'm also feeling positive that if I rest and pace myself for the next few days I'll get back to how I was feeling.