CFS / ME suffers thread: Support, chatter and (caffeine free!) chocolate.

[SirBoobAlot]

As prompted from another thread :) Welcome, one and all!

Hi how's tricks?

Hi hi :) All good here thanks, am on a high today despite bad pain levels, I hate the changes in weather!

How are things your end?

Yh ok thanks - I tend to improve a bit in the colder weather.

I'm fine in the half way points - spring and autumn are my good bits. In the heat I find my mussels ache more, and in the cold my joints.

Glad you are a bit better though, that's good.

Strange - I am. I seem to feel so much better over the last few years. Mine started over 12 years ago.

Fatigue highs and lows are the worst to contend with. The pains are on the back burner.

You can see the pain in my eyes on some days I look and feel exhausted. Its very difficult to explain to someone how my fatigue comes in spurts. It also seems to be connected to my sinsus hence my annoying vasomotor rhinitus.

Since giving up on alcohol my head is better. I have to avoid really late nights or over doing it.

Like today I feel fab, really well and normal but hate to know when I'm going to nose-dive into nauseating fatigue.

Its always kind of living on the edge in a way, isn't it? Never knowing quite how much pain the next day will bring, or just how tired you'll be.

Maybe it would be helpful it we started by sharing our stories, just in case we haven't "met" before..?

I'm 19, and I have a one year old DS. I fell ill three years ago, when studying for my ASs, kind of woke up with flu one morning, kept pushing myself, it turned into glandular fever, and then suddenly one morning I woke up, and couldn't get myself out of bed. I was practically bed-bound for a few months. When I did manage to start getting out of the house, it was in a wheelchair, and eventually worked up to being able to do short walks with a stick. I can walk for further now, but still need my faithful companion.

The ME has affected my body, mind, and life overall in so many ways, its impossible, almost, to remember the way things were before. Its the silly things - like not having to sit down to have a shower, being able to go for a walk without a stick, being able to read a book without it hurting - that sometimes get me down. But generally, DS keeps me on my toes, and although he was very very unplanned, he is wonderful, has made me a better person, and in a lot of ways made me realise there can still be a life with ME :)

How lovely - a sparlkly new and welcoming ME thread!

I'm 39, have been diagnosed with ME for about 16 years on and off, but recently have also been diagnosed with a balance problem, which has explained a lot of my symptoms. I have a lovely - unplanned - dd(7) and all my energy goes into her. I've found I can generally cope with getting her to school and after school activities, but nothing more, I don't work and my house is a tip inspite of everyone expecting me to live in a palace being a lady of leisure

I don't know if you've read this butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
but I recently discovered it and thought I'd share!

Morning all, I'm just marking my place on this thread. I'm only 5 weeks with my first pregnancy so some advice about what the next few months hold from those with more experience would be great.

I love the spoon theory Tends to be how I explain it to people.

Congrats on your BFP Zanzicat :)

Hotcross you should be proud of yourself for managing what you do. Must admit I am moving out of my parents house for the first time soon, and I am worried about how I'll manage to keep on top of everything.

Hi everyone.

I have had M.E. for about 8 years. Came on gradually when I was about 20/21. Now a full time mummy to DS who is 2.9, no way I could work!! And pregnant with DD, due in Feb. Not looking forward to this last trimester with a toddler but luckily DS is good and is quite happy to amuse himself playing. For my bad days, there are DVDs on the shelf to keep DS happy while I lay on the sofa.

My best way of managing is having quite a stric routine and sticking to the same activities and not over doing it. I look well and most people wouldn't know there is anything wrong but is all down to how I pace myself. I don't do much housework and activites with DS are going to groups/peoples houses and socialising that way. Anything like swimming or days out have to be when DH is not at work as I can't manage it by myself.

Happy to be having another baby but also worried about starting all over again. Found the first few months hellish last time but I had no friends and barely went out so ended up with PND. Made myself go to toddler groups and now have a lovely set of friends who I probably won't be able to get rid of once the baby is here.

Hello everyone

Thanks to Boob for starting the thread

I am 37 and have had ME for 14 years now. I am married and have 1 DD aged 5 and 1 DS on the way (I am 37+2 today. My DH is SAHD and has been for past 2-3 years, I manage to work FT now but have been bed bound in past. I have a very supportive employer (military) who I have worked for, for 18 years now. They understand my condition and are very adaptable. I am currently doing just a desk job with little stress or pressure which really helps with pacing. My DH is also very supportive and does everything apart from DD hair in morning and cooking our evening meal - that is because I love cooking and will not give it up till the end - he makes a good soux chef though and normally does what I tell him to in the kitchen

DD was a bit of a surprise as I had been told I couldn't conceive with my endometriosis (had been trying for years with ExH) - coped really well with that pregnancy as I was really well at that point. This pregnancy also a surprise as we had stopped trying for a sibling 2 years ago when it clearly wasn't happening. Had just been for 3 weeks intensive physical rehab and somehow fell pregnant on a weekend home - I think it may have been the acupuncture I was trying for pain relief.

This pregnancy has been harder, I am older, I am not as well as 5 years ago as I have beensuffering with chronic pain for about 3 years now. I am under consultant care and been seen today - they are still happy for me to have a natural birth as I did last time - I was a bit concerned I may not have the stamina to do that this time but will give it my best shot.

I have read the spoon theory before and think it is very apt! I use it to explain CFS often.

Really pleased to meet some friendly faces on here as currently only really use ante natal thread and forces sweethearts.

Zanzicat Congratulations on your pregnancy - we will help however we can!

hotcrossbunny I would be interested in what they have said about your balance - I have always had problems with mine since first ill but it has got to the stage where I daren't drive because of it - I get a really weird falling sensation in a car especially on bridges or raised roads.

Zanzicat congratualtions, I felt pretty good throughout my both pregnancies and had no problems at all. Being tired was the worst. Now 39yrs old.

If anything it helped me - my set routines, good bedtime ritual etc helps loads. Not being miserable in work also improved my mental health and now a full time mum and help OH run business also a bonus. Living on a farm forced me to get out in all weathers and battle on.

I wouldnt really say I have ME as others have more slight fibro/chronic fatigue.

Im also desperatly trying to lose weight and get fit which isnt going too bad as the afterpains used to be horrific but now seem normalish.

The worst thing is not being able to do the full socialising thing, not staying out late, not drifting off at the table at 9pm, being able to get drunk and really party - constant yawning - people must think Im really anti-social.

I don't have ME or CFS, but I do have Fibromyalgia, which is similar, can I join in?

Its not an exclusive club, Saltire Come on in.

I have found that breastfeeding and co-sleeping have been a blessing for my sanity whilst DS is little. Am trying more to focus on a routine now, and have been prescribed some more ADs on top of my Prozac which has a sedative in them as well, so hopefully sleeping will become easier.

Bacon know what you mean about people thinking you're antisocial!

Welcome Saltire - the more the merrier!

Boob - I am going to do semi co sleeping until into a routine this time - DD was great and slept through from 6 weeks but I will take each day as it comes! It will be easier this time as DH now SAHD as opposed to running his own business as he was last time!

I had to stop all meds when I found I was pregnant so I am going to see what happens with pain levels after birth.

I had a really good programme written for me pre pregnancy for phys - I have a plan to restart gently in new year if I am ok .

Hi - may I join too? Slightly different in that I have PVF following pneumonia 18 months ago. I'm hoping to learn from you all! Ds is 11 and has sn (ASD and LD) so needs a lot of support. I am learning to pace myself and only work one short day a week and struggle to do that. I resigned from my other work. Fortunatly my work colleagues (having seen me quite ill) are understanding. Home is harder! Dh works long hours - then comes home to needing to take over poor man. It makes me feel lazy!! I am sure you understand. It is hard for others to understand how variable life is. Our house is always in need!!

Hey Magso, make yourself at home! Its tough going regardless of what its called, so no need to segregate.

Feeling lazy - get that. I find myself apologising a lot, which is stupid, really. I guess its more frustration with myself.

You sound like you've got a lot on your plate. Do you have any support aside from DH?

Ok, I'm back.

i got my fibro diagnosis in 2005 after years and years of pretty much constant pain. I had a realy bad 3 years living in Hampshire, i ahd a walking stick, sight problems, pins and needles etc.
Since we moved it has improved lsightly, I ma back childminding, but am shattered at ight. I haven't had a bad flare up till about 6 weeks ago( got horrendous neighobur problems) and I think it's stress related flare up.
I also still have (and think I always will) the pins and needles and numbness in my last 2 fingers of left hand, down my arm. I also still have sight problems, co-ordination problems and cognitive problems, and the double vision/blurryness is still there. I also occasionally have balance problems.

All in all, a lost cause I think

Saltire sorry you're stressed at the moment, and I hope your flare up eases down soon. And that your neighbours aren't being total arses!

The pins and needles is a nightmare - with a buggy in one hand, and walking stick in the other, I have to change every few minutes so I don't loose complete control.

I can manage without the stick when i have mindee in buggy.

Good :) Do you still use your stick sometimes now, or are you okay without it?

Saltire, I'm so sorry you are having such a bad time, I appreciate fibro is so differnt from ME so hope you dont mind my spiel. I do know that acupuncture has been shown scientifically to help ease the symptoms of fibromyalgia, but you need to have quite a few sessions to make a difference.

Just wanted to say hello to you all.I had ME for about 4 years, I'm now free of the hell and want to offer some hope to those of you in the midst of it. I was very ill for a long time, eventually cut out wheat (did an exclusion diet) and got slowly but surely totally better. Now if I eat wheat by mistake I get ill for a week or so but am 99% symptom free.

I really hope you all find something that helps you.

Great to hear that you are back to your old self Whoknows :)

Could I ask a question - am getting the keys for my first place Monday (eek!) and there is no bath, just a shower. This is great for me, but here, where there is a bath with a shower on the wall, I tend to sit on the edge / lean against the wall when I have a shower. Would it be worth getting a shower stool / have any of you used them? My balance is pretty poor, and I'm not able to stand for very long unsupported. But I don't want to spend money on something and not find it beneficial, if that makes sense.

Hi, can I join please?

I'm 46 and have had ME since my Ds was 1yo, so 11 years now.

Boob - speak to your gp and ask for a refferal to an occupational therapist on nhs, they will come and do a full assessment and provide aids for home eg shower stool free. I used one in my last place very useful!