CFS recovery

Dear Gayle, so sorry to hear that.  It was Hep E (rare mostly foreign virus)that dumped me in hospital for a month when I was 52.  Initially we all thought I'd be better in a few months, but we ended up having to cancel a holiday.  Now I'm 54

I wonder if it was a miracle for me actually.  I got our vicar to come and pray for me one Friday.  The next Monday I felt different and, I've kept on getting better.  Yesterday I walked 3 miles, then cycled 4 on an electric bike set to minimum assistance, then went out to a restaurant with the family and then walked another 2 miles, though the last quarter was hard.

20 months ago, prayer didn't work.

I don't get it, but I'm delighted to be improving so rapidly.

It is a horrid thing, I felt less able than our neighbour who is 90!

Hi seidman,

Miracles do happen! I'm really glad to hear you are doing so well. I would really really caution you to take things just a little slower though. It sounds like you are doing way too much physical exercise all at once. Even if you are better, too much too fast will set you back. If someone who didn't have CFS suddenly started doing what you are, when they were not used to walking and biking, the body would rebel. So take it easy for awhile, just work up to where you want to be gradually. I know it is hard not to take advantage of any time that you feel really good, but remind yourself to take it slow so you can keep having those days for a long time to come. I am so excited for you, I really hope you keep us informed how you do over time. What a great thing to hear!

I hear what you are saying!

I thought I'd overdone it a few days back.  As I got close to the end of a walk, my legs basically stopped and trembled, but there was no other way back to the car, except to rest up and shuffle on.....

But the next day, no fatigue.

The day after that I did about 6 miles, no problem and the next day too.  Only the expected muscle stiffness.  But now I am sleeping well too.

I'm finding now things are the opposite of just three weeks ago.  Now, if I'm droopy in the day, a good walk invigorates.  Previously, if I tried that, I could not go far (sometimes only a couple of minutes) and felt much worse six or seven hours later and more fatigued for several days.

But yes, I'll watch it!

Thanks for your good advice.

 

I'm with Sassy, so many of us have a little bit more energy and can't wait to spend it like spending lottery money, then we pay the price and often end up even worse! Caution please. If there's a lesson to be learnt from ME it's slow life down a little and enjoy it more from that slower pace.

Thanks, I hear you too. I've done it myself and had to spend ten days housebound after just an hour too much pottering.

This time, it's now day 22, I've been able to do loads with no PEM.

I'm getting more hopeful!

Dear seidman,

How are you doing? I hope that you are still feeling well. Will you keep us posted?

Thanks for asking!

Happily, I feel great! I've not had any fatigue of note today. I've driven, walked several miles, looked round several shops.

I nearly cried with relief - as 24 days ago I was worse than the same time a year ago, thinking of selling our tandem because we couldn't use it.

I've even started looking for jobs - as I'm expecting my consultant will be signing me off - and I'll be able to give up certain benefits and come out of early retirement.

I certainly had CFS, confirmed by three consultants. One is cautious and one had their mouth drop open at how rapidly I've improved.

Yes, I'll keep you posted.

Last week I had 1 precious day of feeling "normal" for the entire day. Literally the best day I've had in years. Between having had that day and reading of your progress I have hope that maybe there will be life without CFS someday.

Let's hope so!

Hi Seidman,

So good to hear of your recovery, I bet it feels like you've won the lottery :-) are you still pinching yourself? I know I would be!

My cautionary note would be, give yourself 3 months symptom free before you go back to work, cancel the benefits. I know someone told me this advice just not sure who!

It sounds fantastic, enjoy your new you.

Best wishes

B

Dear B

Yes.  Just yesterday we were walking the countryside as a family and I exclaimed "we are all out walking!  It's brilliant!"

I'll take that advice - and won't do anything for work until my consultant discharges me.  He advises one day a week as a volunteer in September.

Thanks

That sounds brilliant Seidman, walking is such a wonderful thing to get back. Sounds like your consultant is on the ball and easing you in gently is a good idea.

Great news for you and your family. It has made me smile that things are going so well for you.

Best wishes

B

thanks again!

Im looking forwards to doing some Hi Tech teaching again.

Hi Seidman,

Just checking how things are going. You still keeping up with the walking etc?

B

yes, great thanks.

Better and better.  Walked nine miles yesterday without issues.  Cycled twelve miles a couple of days ago on an ordinary bike.  All fine.

Amazing to be free again.

Hoping you improve too

I'm wondering what's helped you to improve so much Seidman? It's amazing that you have; well done! 

Seidman,

So happy to hear that you are still going strong. Hope you will keep letting us hear from you.

Good question.  I changed nothing at all.  The only thing that was different was that I contacted a vicar from the local Church of England that I know and asked him to come round.  He made a date in his diary and came round one Friday.  He prayed briefly before leaving.  I felt no different.  But on the Monday morning which was about 68 hours later, I woke and felt different.  So I tried doing a titchy bit more - and had no PEM.  By that Friday I was doing loads more again with no PEM, or pains.  It's just got better rapidly since then.

I think I'm practically totally better and just need to get fitter like any healthy person would have to after just over two years doing little.

I'm seeing my specialist again in September, I hope he is as confident as I am.

Will do.

Excellent! Someone's putting me in touch with a Christian healer woman. I'm reading the book 'Love Never Fails' and the author Adrian Rose suggested it as she's in my area. I feel ready for healing; perhaps we have to get to that place first and then with prayer it happens.

I"m not suggesting that people don't get better without prayer but a friend of mine recovered from ME through prayer.

I really don't know. I wasn't really expecting anything - but didn't have anything to lose.

Except that I think in all areas, including medicine, faith - there are folk prepared to take advantage. So I chose a well respected local who didn't make any money from it.

Wow- that's great!

Reading his blog, it looks like more than physical well being too

That sounds fantastic, long may your recovery last. If you can think of any tips you can pass on to us all, that would be good. I know you have faith and that this seemed to have played a part too for you.

Great news, inspiring to the rest of us.

Best wishes

B

Just common sense really...

Listen to your body, lay down when you need to (even on people's floors, or in the local library as I have a couple of times!)

Don't do too much, but don't do too little

Get some hobbies

Enjoy friends

Say sorry quickly!

Yes he's in a really great place all round! And he had ME very seriously.

Thank you Seidman.

I wrote two replys. Both disappeared as I was shifted to another page by the advert on my screen!

I think I can safely say, I enjoy friends and family as much as the condition allows but, say how much I appreciate them more now.

I listen to my body but sometimes read It wrongly and thus get payback symptoms . although I am fine with laying down In public places now as necessity over rules embarrassment!

And luckily don't need to apologize often and understand the sentiment of not letting things linger.

Again, great news and Inspiration

Best wishes

B

Hi Seidman,

How's it going? You still improving I hope? How long has it been now since things changed?

Best wishes

B

Hi Beverley

All good.  I started getting better on July 13th.  I can now walk for four hours and cycle for over an hour.  A stunning recovery. I was slowly deteriorating until then.

I think I'm limited only by having been doing little for 25 months, just a return to sport fitness needed.

Ive just one small symptom left: My eyes can feel droopy, but I'm not tired when that happens.  A good walk sorts it.

I see the specialist on Sept 4th.  I hope he declares me well. Then I'll look for a job!

Hi Seidman,

That's fantastic news! You know I'm still going to give a word of caution though! Give yourself 3 months symptom free before looking for work.

Just curious about the electric bike you had. Was that like a push bike but powered?

B

Bike:  Yes, a kalkhoffe Aguttu.  Expensive but brilliant.  Around £2000.  Other types can be about £700 to £7000

That vicar has the gift of healing. What a blessing!!