How do you cope on Holiday with ME/CFS

I know where you’re coming from... but some people may be in remission and starting to hope about their first holiday for quite a while. When I am struggling with the condition, going downstairs to the lounge or the garden is a holiday from the bedroom.

Remission, i like that word, holiday too ! 

Hi Tina,

Thats very good advice to take several shorter breaks perhaps spread throught the year to give the body a chance to recover a bit.

It is hard trying to please the family and not to feel you are letting them down in some way or damaging your own health

ditto............wish i could?????

I'd really love to and I even planned to go on a retreat with Franciscans last year but it just wasn't possible. It would have just been too much. Maybe this year! 

would that have been an 'active' retreat i.e. with outdoor activities or just prayer/devotion and workshops.

Caitlin

i'd imagine the heat and the sunshine helped too george? hope u had a great time?

Caitlin.

Hi Caitlin. Yes, it was Summer and hot and very dry. That probably added to the effect of the quality of the air. The air typically comes from Antartica, northwards up the Atlantic to its landfall at the Iberian peninsula.  

subsequently, the change of home environment was the first step towards my recovery.

I find sunshine is good and often even get a few weeks of remission in the summer and this can happen in no particular month but it can be quite sudden and will switch back equally as sudden (but amazing while it lasts) it's just the heat that I find can be too much!  I wonder whether there is some connection with the SAD condition? I take vit D as well (prescribed) as my levels were too low and that has helped relieve some of the pain in my legs.

Thanks Olivetree. In UK w can have sunny spells at any time amongst a generally grey backdrop. Are you saying your bright spells coincide with the bright weather?

I wonder If there is a connection with bright light. The quality of brightness from a clear sky is different in the Algarve to the English Midlands.

I also wonder if hot weather in England draws pollution upward and away and brings cleaner air in from the Atlantic. That improved air quality relieves symptoms while it lasts.

now, this sounds good. are you now recovered george?

Caitlin

Hi Caitlin, generally I would say yes.  When pressed for a full answer I would say that a persistent remission has been achieved. I still have to be careful about over exerting myself physically. If I do there will be a penalty of being washed out for about two to three days.

I have posted a fuller account on three different discussions in this group. If you're interested you may be able to find them .

wow, i'm certainly interested. well done you. is there a possibility of doing a 'cut & paste' of those posts.

Caitlin.

My ME history - posted again for Caitlin

It was an idilic life for a young father with a lovely wife and threeYoung boys. Up early to tend The horses, walk and milk the goats. Family breakfast then off to School and on to the office. Then collect the boys and off home to walk the goats and tend the homes. weekends just as packed. It was a great action packed semi rural life in our large old house requiring endless maintenance and boundless energy. My energy fell a little short when the wheat and barley fields were sprayed. That should have warned us.

Then came the Wilson era. Mr Wilson infamous for his "pound in your pocket" delvaluation speech. We could no longer afford our lovely big old house in its large garden and stables and outhouses. We sold up and moved to a smaller country house twenty miles the other side of town.

It was not long before I went to the doctor. It is one of these "space age viruses" he pronounced. Code for "I have not a clue what is wrong with you". As I didn't get any better he referred me to a chest clinic. There the consultant looked at my Xray which had a number of bright dots sprinkled over the chest. He suspected Sarcoidosis and a biopsy proved it.

He put me on a "smalll" dose of Prednisolone (22 mg daily) for three months. He assured me with two or at the very outside three treatments of three months he would have me right. From the first pill it was a disaster. Worse, I had not yet learned to say "No" to a doctor. The fatigue grew worse, I generally felt unwell, brain fog came and deepened, memory became more and more patchy, logical thought more and more impossible-at its worst, I had half an hour first thing in the morning-the smallest decision could take a day, or two or three. Speaking took immense effort getting a couple of words out at a time. 

One time when I was about 40 I was walking with my father-in-law. He was about 70. I just could NOT keep up. I felt that I must be like an 80 year old. My legs would not go fast enough. And I was cold although I was wearing my wool overcoat on a hot  August day. 

All that was spread over ten years. To me it is just a vague, patchy memory of misery. Our GP fairly early on had told my wife that such illnesses sometimes happened and she should not expect me to be around in about two years. Even in that my doctors were not correct. But pill was added to pill. None helped. At the end of this nightmare period I was attending the professor of psychiatry from the local top rate university. He listened/waited patiently while I struggled to get out the words to answer his questions. He added a large pill to my already large selection. But he wrote to the lung consultant begging him to stop the treatment. The Professor at least did not think I was a nut case or that my troubles were all in my head. Somehow when next attending the lung clinic I managed to decide. I told the consultant I would not take any more of his pills. "Is that fair to me." he replied. "If I do not come back, would that be ok?" I said.  He seemed happy at that.  

We, my wife mostly, had been doing some research. It was difficult. There was no web that provides us with so much help today. We talked to friends and got some help from homeopathy. We were also told that if all else failed, and we felt all else had failed, we should move to a different area. So we sold again and moved into town. That was the beginning of the long slow road to recovery. My wife took advice from a dietician. So I had a short period of a diet of filtered water, boiled brown rice and pears. Why? apparently few people react to brown rice or pears. Then one food at a time was added. If I did not react that food was added to y diet. If I did it was excluded. With my new diet I gradually, very gradually made progress. Once I was making progress it was obvious when a household chemical or cosmetic upset me. Any offender was excluded. It also became obvious when I became affected by chemicals outside the house. I became very wary of any scent of chemical including cosmetics. With unremitting care and perseverance I regained an acceptable level of "normal" health. It had taken much of another ten years. After that I gradually became more confident and little by little I found I could tollerate nearly everything that I had once excluded. I was almost normal once again. Sadly, I have few memories of my boys growing from primary school to their mid teens.

The major lesson I had to learn the hard way was never to push myself physically. Wherever I did there was a long pay back penalty of exhaustion and fatigue. I still cannot afford to push myself. I have to think very carefully whether the object is worth the cost of two to three days of being washed out.. 

Several years ago we had a bright summer and I was solar gazing. It's a technique that doesn't hurt your eyes, in fact my sight improved a little. I got so much more energy I managed to decorate my living room! Slowly and bit by bit but I did it. 

Light definitely helps, and light therapy boxes are really good.

Hi George

Did you suffer a relapse of any kind or were you able to enjoy the holiday? I think it’s sometimes worth going on a holiday just so your partner gets a change…  

 

I relapsed almost immediately on returning home. It gave us the clue we needed that our environment was not good for me. My wife benefited greatly from the holiday. We were so impressed we bought a holiday home in the Algarve so we could visit twice a year. We paid for it by letting the summer season. You could do that some 30 years ago. It is a dead duck now. The holiday market has changed so much to say nothing of the on going banking crisis.

So we moved house and that was the first step on the long road  to more normal health.

wow, success by the slow process/incremential route. from what you say, it sounds that you had that 'pesticide' spray poisioning & remains susceptible to environmental toxins. it's great that you've reached a fairly permanent state of ''remission'' provided you pace yourself. i truly can't see why a Psychiatrist was necessary. what 'daftness' - it's in the body not the mind??? it's encouraging to others that u have overcome it. well done u.

Caitlin.

Hi

I agree it’s good to hear a positive outcome from ME/CFS all too often its total gloom and doom and no end in sight from the clutches of this condition. Well done George

Yes Dragon it's a learning experience, too true! I know a lot now that I didn't know before. And wouldn't even have looked into if I'd been healthy.

Thank you Caitlin, Dragontest and Georgia, I am encouraged that you found my note useful. I have just read a long text in a cancer sufferer's journey of many years. I didn't think long notes would be possible. I shall add my note to my profile to avoid multiple postings in the future.

Hi George.  I'm not sure about that because even if we get bright winter weather it seems not to make much difference. I know our summers are not always that great but generally there is more sunshine around and perhaps it accumulates enough for a bit of relief.  You may have something there about pollution and air quality. Last year I had improvement around June / July but the year before it happened at the end of August and right through to mid October. The year before it was in May/June but by July I was really poorly again. There is no real patten to it but I am usually much worse in the winter and February is often the worst time (not too good right now) - after accumulation of generally dull weather for several months.

George I envision you like Gandalf with his staff of light and love, which is power, passing it on. He had to suffer to pass it on.

That came out wrong, I mean thank you for passng your insight on. And I'm sure you're passing it on in the Cancer group too. Healing blessings to you dear friend. 

Thank you Olivetree. I shall keep the weather under close observation and see what my reaction if any is to it.

Thank you Georgia that is very kind.  Yes I contribute to the Prostate Cancer group and gain comfort and information there too.