Calling all ME/CFS sufferers

mymissmegan

mymissmegan

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Hi there, this is really a post to hear from people who suffer with this condition and have their own horse.
I have recently been diagnosed with this condition after months and months and months of no energy, stomach complaints, no drive, depression, tiredness, forgetfulness, lack of concentration etc.
I am really struggling with being positive and 'pacing' myself when i feel so guilty on letting my horse down and wasting her. I have her on DIY and would never consider any other livery as i love being solely reasponsible for her, and my horse has always been the thing that keeps me going but now im finding it hard to muster the strength mentally and physically to even go on a hack let alone anything more strenuous, im not scared of my horse at all and completely trust her i just feel so drained. I dont want to give her up.
is there anyone out there that is suffering the same or has been there and can offer me some advice on how they paced themselves and coped?
it would be nice for the horsey people on her that suffer with this could get in touch as we are all in the same boat and can offer each other support.
thank you for reading. P.S sorry for any spelling mistakes my brain isnt functioning like it used to!!!
x x x
 
Hi, sorry to hear your going through this. A friend of mine was diagnosed with MS quite a long time ago now - before I knew her actually. I remember her telling me she had MS and what went through her mind etc etc. Like you she was tired and went through all the ups and downs. When I met her she had known for a couple of years, and I was shocked when she told me because I have NEVER known anyone with more get up and go than she had! She went through rough days but mostly you would never know. She now has 2 children and loving hubby and is doing fine (long may it continue).

On another note, my husband had a heart attack 4 weeks ago, he's 44yo, even the Dr's are shocked at the age. We'll never really know but its probably hereditary (he was adopted at birth), so he is also going through a period of tiredness and negative thoughts and the long term prospects. Its tough to handle in the early stages, but mind over matter (easier said than done, I know). Do a little at a time. Go for a short ride on your horse, 10 minutes or so. Once you've done it, you'll be pleased and proud of yourself for doing it. Then do a little more each time. Dont get angry if you're having a bad day and need a little help, MS is a big deal. Wishing you all the best and try and keep your chin up:)
 
i was diagnosed with it when i was doing my GSCE's after an illness (in retrospect docs said it was prob glandular fever that started it - but i was not tested at the time)

i do believe that it is something you can come out the other side of - i lead a perfectly normal life - in fact most of my friends say they could not do as much as me! so i do not class myself as having it now (i know i know its supposedly with you for life but i dont agree ;))

anyhow - i do pace myself - i do go to bed early and i do do everything i want to - so what if i need more sleep than the average jo?

i also think that it is a mental as well as physical illness - some people say all mental - but i know the fatigue - the muscle cramps etc so no - it is not purely mental - but i do think that there is both sides to it.

first things first - you know what it is now - no more worrying its something more serious - so that's good - that's how i viewed it when i was told.

next - you can manage it - you can get through it and you can lead a normal life again - you have to belive that - cos it will happen or you'll suffer the rath of me :D ;)

set yourself a routine - i am far far bettwe in a routine - and ensure you alwyas do something physical every day - never sit all day on the sofa - i found that the most draining of all and i would start to sprial back down again. even when i feel uttery exhausted and awful i will go for a 5min dog walk - just to get some air and use my muscles - that is how i began to get myself back out of it

i could go on and on;)

but seriously - if horse is checked once a day and has food (even just grass) and water then you are not wasting her - you are caring for her better than many other horses out there so feel happy about that. no horse is wasted on anyone who looks after them :)

(btw - can you ride bareback - i know the exhausted feeling - on those days i jump on bareback for a 5min pootle - as even tacking up seems a chore and beyond my ability - and it def makes me feel better - even if just a walk round the field :))
 
i was diagnosed with m.e a couple of weeks ago, mine started after i had a very nasty virus at easter. Ive found as long as i pace myself and dont do too much im ok. I check my horses once a day (they live out) and potter about the rest of the day. If i need sleep, ill have a short nap in the afternoon, any longer and i feel worse than before i had it! The muscle cramps and achey limbs i sort by taking nurofen. I try not to stay in the house too much otherwise i start feeling drained, i walk the dogs to pick me up like posie-honey has said too. I have an understanding partner who doesnt get too upset if the housework isnt done which also helps! Try and go to a local healthfood shop, i did and they gave some yeast stuff, it definately helps take the fatigue away but tastes rank. I know sometimes especially after lunch, my fatigue gets so bad sometimes that if i dont sit/lie down i will fall down. It overwhelmes you. alot of people dont understand m.e and often bypass it as being lazy as we often appear in normal health (on the good days).

I started to back my youngster just before i got ill, its only now im starting to carry on, luckily he's been no bother and ive been able to just jump straight back on, but he's not getting the work everyday he needs. still hes only a baby and its doing him no harm being out in the field, aslong as he gets his tea he's happy!
 
Hi, I have CFS, IBS and depression, and work as a groom on 2 yards.
Its hard, and Im not going to lie, there are some days that I want to give it up and crawl back under the cover - at the moment thats every day - but I just keep thinking that my girls dont care if they dont get groomed to a high shine every day, as long as I feed them! The yards I work at need to be turned out, and I need to work to keep my girls.
I think you have to figure out what NEEDS to be done as opposed to what you WANT to get done... ie, mucking out needs to be done, tack cleaning isnt a nessesity (sp).
You will, over time, learn to pace yourself. Some days you wont have the energy to poo pick, unless you have a rule on your yard that you must do it daily, just leave it for the next day.... but dont let it run past you! 1/2 barrows a day is much better that 6/7 barrows at the end of the week.
Good luck! xx
 
posie_honey said:
i was diagnosed with it when i was doing my GSCE's after an illness (in retrospect docs said it was prob glandular fever that started it - but i was not tested at the time)

i do believe that it is something you can come out the other side of - i lead a perfectly normal life - in fact most of my friends say they could not do as much as me! so i do not class myself as having it now (i know i know its supposedly with you for life but i dont agree ;))

anyhow - i do pace myself - i do go to bed early and i do do everything i want to - so what if i need more sleep than the average jo?

i also think that it is a mental as well as physical illness - some people say all mental - but i know the fatigue - the muscle cramps etc so no - it is not purely mental - but i do think that there is both sides to it.

first things first - you know what it is now - no more worrying its something more serious - so that's good - that's how i viewed it when i was told.

next - you can manage it - you can get through it and you can lead a normal life again - you have to belive that - cos it will happen or you'll suffer the rath of me :D ;)

set yourself a routine - i am far far bettwe in a routine - and ensure you alwyas do something physical every day - never sit all day on the sofa - i found that the most draining of all and i would start to sprial back down again. even when i feel uttery exhausted and awful i will go for a 5min dog walk - just to get some air and use my muscles - that is how i began to get myself back out of it

i could go on and on;)

but seriously - if horse is checked once a day and has food (even just grass) and water then you are not wasting her - you are caring for her better than many other horses out there so feel happy about that. no horse is wasted on anyone who looks after them :)

(btw - can you ride bareback - i know the exhausted feeling - on those days i jump on bareback for a 5min pootle - as even tacking up seems a chore and beyond my ability - and it def makes me feel better - even if just a walk round the field :))
Click to expand...

^^^^this^^^^

I was diagnosed 10 years ago, i had it for about 5 years from start to finish. I do still get tired but am not sure if that is something to do with age rather than ME:D

You have to try and keep your humour which i know is difficult, and dont try and fight it. The best advice i was given was to "listen to my body". When you need to rest, do it. Do not let it get you down if you have to let others down etc.

As for my mare, i put her in foal. I found that having to go up and do her everyday just got too much and she was not the type to live happily in a field doing nothing. I found with the riding that i also suffered from vertigo so would spend a lot of our rides feeling dizzy and unbalalnced, not nice for me or her!

When i was feeling OK i always went for a walk, my friends loved it as i used to borrow their dogs so i had some company.

Inactivity is a killer, keep your body and mind as active as you can without wipeing yourself out.

Best of luck, it does get better:)

xxx
 
another quick thought... i used food for energy = mainly sugar as a quick fix boost to get me going - and i ended up piling on the weight and now i am slightly sugar intollerant from eating too much when i was younger :o (still love the taste and crave sugary stuff but if i ahve much now i go hypo afterwards and feel awful - no not diabetes - i've been tested for it - just a slight intollerence)

so my advice is learn from my mistake lol!! eat healthily - your body will function far better on fresh fruit and veg than vit and min tablets - drink plenty of water and eat a balanced diet - that will help you no end :)

feel free to pm if you want x
 
Can I just say how much I admire you all for working through your ME and not letting it dictate your life!

My cousin was diagnosed with ME about 3 years ago. He has completly given up and spends every day all day, alone in his house. Like you say sometimes just sitting around all day can make you feel worse. I will print this page and give it to him. Hopefully your stories will inspire him to try to change and not let the ME take over his life.

xx
 
that partly the mental aspect of it - you feel tired and achy - so prob then don't do anything - and then you start to sprial downwards - i still feel myself doing it now if i'm not careful
also you feel depressed as you can't do what you used to - so you stop trying - and the above happens again
it can be a slight self forfilling profecy (sp:o) in that sense - as the less you do the worse you feel - just any little tiny target - as i said before - even just a 5min walk - that you acheive - will help you to feel more positive and help the sprial back up :)
i hope some of this does help him x
 
Hi, they're currently investigating my symptoms with a view of hypothyroidism or CFS - I'm just waiting for my blood test.
Even though I don't know what the diagnosis is just yet, doing the horses is becoming a little harder all the time - riding really takes it out of me the day after and its difficult for me to get up in the morning especially if I've had a bad nights sleep or a lot of pain the night before!! :o
If I'm having a really hard day and really struggling I won't ride, I will just spend an hour or so grooming, or even a walk in hand to let her graze. Not found many more strategies to cope just yet, so will be interested to see what people say!
I just think its all worth feeling so rotten, when you hear your horse whickering at you over the stable door or get to give them a hug!! :)
I tend to wake up about 9, get to the yard, do what needs doing, ride etc then get home for about 12 and I will sleep through till about 4 then and back in bed for maybe 9 or 10. If I only have a short nap, I feel rotten and if I don't sleep at all through the day I'm like a zombie :(
K x
 
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LaurenBay - sorry to hear about your cousin, like any illness you have to approach it with the right attitude. You HAVE to accept first that you have a problem to then be able to move on and fight it. I dont know how close you are but could you maybe suggest that he speaks to someone regarding how he is coping?
 
I've had ME for 14 years.

I've bad some very bad periods and would give anything for a life without constant pain.

My horses have always kept me going and I find spending time with them really helps.

Gentle exercise and pacing are the best coping strategies.

Yes, I still have days where I can't string a sentance together or walk more than a few steps but I also have a full time job and three horses (two are semi-retired and the other is on livery), my own home and help out with a friends business.

I try to get 9 hours sleep a night and pace myself so that I only do one activity above my basic level a day (which is work and take care of the basics for my two on DIY), so on days I ride I don't do any housework etc.

I do all my shopping online and have a lightweight hoover and yard tools and other labour saving devices.

I'm very lucky in that I have a great boss and friends that do not mind helping me out with the horses.
 
1. Routine - Make sure you do things at around the same time everyday, the body gets used to that and tends not to over do itself.

2. Go to bed early, don't stay up to late! The pain, exhaustion will be worse if you do!

3. If you want to ride, find someone to come walk on foot or watch you ride so they can be there to motivate you to do it. Even if you only ride 20mins a couple of times a week.

4. Make sure you eat, worst thing for me was when I could only stmach a packet of crisps a day! Once I started forcing myself to eat more, symptoms reduced.

5. Don't do anything that will release adrenaline, don't ask why becasuse i don't know why, but once i stopped i improved dramatically. (google the lightening process)

6. Don't dissapoint yourself, make realistic targets and take one day at a time.

It took me 4 years to recover and i started the relapse over 12months ago. I am just about coping.
 
Oh my goodness im so overwhelmed by all your responses!!! Thank you all so much, I was starting to feel really alone. It's nice that so many people are here for each other! Great to hear how others cope! Thank you thank you thank you x
 
tabithakat64 said:
I try to get 9 hours sleep a night and pace myself so that I only do one activity above my basic level a day (which is work and take care of the basics for my two on DIY), so on days I ride I don't do any housework etc.
Click to expand...

That's a very good idea, one thing a day.
I've just got (from university support) a lightweight laptop and a trolley bag for my books, so that should ease the pain a little bit! Every little bit of support helps I guess.
K x
 
Never feel like you are alone, feel free to PM me if you need to.

A difficult thing to cope with is the off hand treatment you get when you tell people you have ME/CFS, my family still refuse to accept that i was ill and my mum insists on telling me it was "all in my head". We never talk about it!
 
I was diagnosed with ME at the age of 13/14, though it was thought that I'd had it since the age of 9, and it had been getting progressively worse. Five years on, I wouldn't say that I'm 100% better- I still have periods of boom and bust, and am certainly more susceptible to illnesses than the majority of people I know - but so long as I watch myself I can live an extremely active life (in fact, it's not the physical stuff that tires me; having spent several years out of school, the fact that I've now returned to full time education has proved far more tiring than spending all day for several weeks on my feet and working). In fact, this year has seen me with my first horse- something that I couldn't have considered even a year ago.

I think the important thing is to ensure that you're still injecting a little bit of whatever you enjoy into your life. As everyone has said, listen to your body, learn to know when it's telling you to rest, and when you do have energy be careful not to blow it all because the likelihood is that you'll feel it the next day, and that 'boom and bust' is what you want to avoid.
ME is a hard condition to have, as it's impossible to explain exactly what it is. The general response I had when telling anyone about it was 'What, so you're tired all the time...?' Which, in a manner of speaking, is loosely true, but the true extent of the condition goes so much further and deeper than that. And I think it's pretty easy to loose confidence in yourself and become demoralised.

So, for your predicament; go with your gut. If you feel tired, then you have to listen to that because in the long run, pushing yourself too much will do more harm than good. I can completely understand wanting to be on DIY because of the time that it gives you with your horse, and it's all part of the lifestyle. But be realistic with what you can do- you've got to do the best for yourself and the horse, but if it's what you love doing, then that's important, as in my experience it was when I lost the opportunity to do anything that I enjoyed that the condition worsened dramatically as I completely lost motivation and faith in the fact that I would actually be able to recover.

Okayso, Sorry for the novella. It's a hard topic to adequately cover with words as it's a more complex condition than it can sometimes come across. But you can recover, it's not the black hole that it can appear, so try not to let it get it's claws into you too much. It can toy with emotions a little too effectively, and at the end of the day, it's really not worth it. ;)
 
I agree with Shampain. I've no experience of it myself, but a good friend has had it for years. It seems like with her, she is worse if she pushes herself too much. It has actually made me (a non ME sufferer) think more about listening to my body when I'm tired...

I wouldn't be too hard on your cousin - only he is living through it, and it can be horrible...

That said, I do admire those of you that have found ways to live with it well.
 
There have been some brilliant replies on this thread. I have been struggling with CFS since I was 14, and now 19 years later (my god, thats the first time I've worked that out) I am only really getting a handle on it. Mainly due to me trying to do too much, and prove I wasn't ill......

I have, however, managed to get my BHSAI, have a family, and work a little up til about 3 years ago. I am now a groom to four, five days a week on one of the most labour intensive yards I have ever seen :D in amongst doing them, I have a second yard I work on, which involves lots of rushing from one job to another on a motorbike :o:p Not the BEST thing for my condition, but I make up for it by managing my life to the smallest detail as far as humanly possible.

I am actually off to bed now, as I am cream crackered, having completed a two hour hike last night, not a good idea, but the scout group needed help or they couldn't go. So, yes, I still do stupid stuff, but I know what's going to happen and how to deal with it after. Which is very wrong, but hey ho, sometimes you can't avoid having to do something. Just wanted to say please, message me any time you need a chat or a bit of support, hopefully I'll be able to message you tomorrow when brain is more in gear :D

Hang in there hun xxxxx
 
you guys are amazing! I have fibromyalgia which is similar to ME/CFS but with more pain :(
I've had to give up riding and have loaned my horse out. I was only diagnosed last year. I couldn't look after a horse at all, I can barely walk my daughter to school every day and it's only over the road.
I have had to use a wheelchair most of the time and only recently have I been able to walk even a short distance, and then I have to sit down and rest for an hour or so.
I haven't worked for over a year and am on DLA. I've got much better since I had my baby daughter 3 months ago which is a relief as I was very worried at how on earth I would look after a baby but I'm managing well.

Hopefully I will continue to improve like I have.
 
This thread has given me a real boost it's so wonderful to hear from you all, I'll post again in response to you all when I have a bit more energy x x x
 
I was diagnosed with m.e last summer but had it for at least a year previous, I had 3 horses, 1 youngster, an ex racer and a retired pony (my first pony).

As a result of my m.e I made the heart breaking decision to sell my ex racer bella and keep my youngster gem. Being only 16 at the time it was completely gutting but the way I justified it to myself was that gem is young and we can build the energy levels up together slowly- and so far it's working.

Having missed two years of school, blagging my way through my gcse's (waiting for my results ATM), sleeping up to 20hours a day the choices I made were for the best.

Now, only 1 year on, I sleep roughly on average 10 hours a day, I'm able to ride most days for up to 2/3 hours and I compete quite often:). It is possible, it's all about pacing and managing!

Echinacea also helped me a great deal, seemed to give me some sort of energy!

I avoided anything with caffeine in it and most sugary foods- also helped, now I can drink the occasional cup of coffee but I am wired for hours after (and I really mean wired) and sugury stuff makes me more tired!

There is light at the end of the tunnel trust me:) I'm going upto David broomes in august for sj champs of GB - I never thought I could do it! Will soon see :-P!!

From being a good 9 on the scale of good and bad m.e - 10 being bad, it just proves time and management can make that difference. However perhaps you need to call on a good friend to do your horse on the times you just can't get up and do it- please don't force your recovery. Trust me, you'll go 10 steps back rather than forward.

Also if you have Facebook, search m.e, Cfs .. As theres an amazing page on it all with a recovery step programme!

X good luck! X
 
Interesting what people have said about their experiences with food around ME- I've come out this end of it (well, to a point) with a Gluten intolerance, and I can't cope with too much caffeine or sugar, either. So... healthy eating, then?
I've also found that Echinacea can be beneficial, and I also had B12 injections for a couple of months (painful and expensive, and not entirely sure whether the improvement was down to them, CBT, or a mixture of the two). Anyhow, keep yourself well, and healthy. ;)
 
Just wanted to say a big big Thankyou to all who posted. Iv been meaning to post for a while. All your posts really helped and help me, I felt so alone and so awful and reading all your responses gave me hope and inspiration. I'm riding again now but am not back to work properly which I feel quite guilty about. But the main reason for this reply is such a MASSIVE thankyou. You all really changed my way of thinking x x x
 
Hello...this will prob be an epic but I hope some of it will help you or atleast induce coma like deep sleep...hey thats always a bonus!its a win win situation!!!;-)...I have ME/CFS & Fibromyalgia after my mare reared & fell on me on concrete(2004)...I was paralized for 5 hours after breaking every vertebrae plus my sternum(i thought i'd broken my whip...evidently not!!), tho initially they only treated 4 vertebrae (2 in thoracic spine & 2 cervical(neck)...I suffered spinal cord damage & alot of nerve damage which has never really corrected/healed..which is probably what exascerbated (typo) my fibro & led to ME/CFS.....I had 6 horses and now down to 5 due to sad loss of one...BUT they keep me going. I now cannot take any meds due to being hypersensitive to virtually everything..I was on 36 pills a day this time last year..yes they stopped the pain, but made me feel like death..gave me a food revultion & made me anorexic...I had been tried on everythign from various forms of various concoctions of the following which I would have to take in certain groups very carefully...morphine,codeine,ibuprofen,naproxen and epilepsy drugs(commonly used for ME/fibro) tramadol AND paracetamol....now I cannot take any prescribed drugs and the only thing my body does not reject is antihistamine!!! So I devised a plan that actually works for me...I ride and do as much as possible with my horses every day..some days I feel like I can't even lift my mobile to my ear to get help..let alone lift a kettle or slice/bale of hay...other days, I'm fine...I also bought a spa & a sauna and kept a diary of weather/feelings/activity/pain levels/food intake...you soon get to semi guess what kinds of weather help/hinder & I am totally free of any pills or potions. I regulate my pain using my spa & sauna even up to 4 hours a day(in short bursts) around my horses and drink plenty of water...coffee helps too(black)...try to eat as healthily as I can & eat fresh & cook from scratch as much as physically possible so no processed food!...and try and fill my life with pleasant things,laughter & positivity as much as I can...yes some days I take ages...other days I get loads done..I try ignore them numbness & tingles & frequently get power loss or feel like I have flu (without the sneezes!)for days..but the most important thing, is listen to your body, pace yourself & get plenty of rest...true you may not reach true restful sleep for weeks or months, if you need to have a power snooze do...but get out & fight against it...enjoy your horse they are very healing and while they won't totally be able to cure you but have a very gentle caring knowing about when you need a little help & when you are feeling good, riding will help(its suppling excercise with all your weight supported) there is a very good facebook site for when you need to rant...and pretty much any time of day someone in the world will be there to hate cfs with you...its called Fibro360 but covers cfs/me too. Above all, do not give in to it and do not let it define you...define yourself by fighting back & winning (and have a lie in if its a tough day)xxxx
 
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