ME/CFS is a real illness

[garlicbutter]

Oh, I just need to sound off after things getting a bit heated on another thread.

Fibromyalgia included also. I don't get huge amounts of pain, but do spend huge amounts of time resting so that probably helps.

I'm pissed off that my occupational therapy turned out to be "Learning How To Be Ill" and that I'm going to have to appeal (again) against my DLA refusal.

I'm pissed off that I spend so much time on Mumsnet because I can put it down every 20 minutes and change my activity/position. Also that it's practically my only contact with the outside world.

I'm just generally pissed off

Fellow knackered whingers, feel free to rant!

I'll be back in 20 minutes.

[Hebiegebies]

Another person explained it as having 30 teaspoons each day. It takes 2 teaspoons to get dressed but 10 if you add in a bath.

It takes 5 teaspoons to have lunch witha friend at her home, but 20 if she expects you to cook lunch and wash up afterwards

It takes 2 teaspoons to pay a bill on line, but 8 if you need to phone up and talk to someone because there is a problem

You only use 2 teaspoons to watch a soap, but 5 if it is an emotional programme about famine, the economy etc

It takes 2 teaspoons to get ready for bed, but if your partner has had a bad day you use up 10 just listening to them

[moosemama]

Weasel, from my perspective I would have to say that firstly, if you have CFS or ME or whatever the white coats have decided to call it in your particular case and there are things you want/need to do, that will help you stay positive and not end up with the depression that can arise from your life being stolen away by one of these horrible invisible illnesses, you have to prioritise, pace yourself and bank your energy to use for those occasions.

So for example, if your sister is hoping for an evening out with friends on Wednesday, she may well need to rest from Saturday through to Wednesday afternoon to be sure she will be able to do it.

Then, after her evening out, she will need x amount of recovery days, some of which might be extremely hard with her energy stores at rock bottom. During this time she genuinely would not be able to pop to the shops for someone or visit family, as she would most likely be completely physically and mentally exhausted.

Also, time spent with friends who lift her spirits, rather than with family who inevitably come with a raft of emptional and other expectations of her, is likely to be less exhausting, especially if the family is doubting or not understanding her diagnosis.

Personally I find time spent with extended family (I'm talking parents and grandparents here) particularly exhausting and harder to recover from than time spent with good friends who have no expectations of me and don't make any demands.

So, it is possible that in order to do the things your sister needs to do for her own mental wellbeing, she is actually choosing to spend time with friends, rather than being more involved with her family. Which might sound wrong or harsh, but sometimes is just a case of self-preservation, especially when you have been struggling with this illness for a long time.

[garlicbutter]

I've never got to grips with spoons as it seems to require that you know how many 'spoons' you start with. I'll give your traffic light system a go, Hebie! It chimes better with the OT's suggested activity changes, which does seem to help me get more done in a day.

I'm sorry to hear it took a miscarriage to trigger an improvement. It's interesting though. Glad you're on the mend ...

Chilena - welcome to AIBU Yes, it's a bit weird how we all keep hoping to find we have got a known illness! Also a bit mad: there are plenty of known illnesses without clear cause or treatment; having one of those is just as bad as having this. Still, I wish your sister well and (perhaps) a curable diagnosis.

"Thank you! At least I look good" - I am so adopting that!

[moosemama]

Hebie, that is an excellent way of explaining it.

For me in my current phase of illness, I tend to think of myself as a kind of faulty rechargeable battery that gets more and more drained, with some activities draining more energy than others. (A bit like when you watch a video on your laptop and all of a sudden the hour's charge you thought you had left has dwindled to 10 minutes before you need to plug it in - again!)

Because the battery is faulty and doesn't recharge properly, I can't do anything else until I have had sufficient time to build up enough charge to resume activity. During this period I am pretty much sofa/bed bound and there is no way, no matter how much responsibility I felt towards my wider family, that I could leave the house to visit or help them in anyway.

That said, I am now being told that in all likelihood, the CF/ME I have suffered from for the past 20 odd years is highly likely to actually have been MS all along, so I'm not sure if I'm a typical case, if there is such a thing.

I have been told I have PVS and CFS at different times over the years, as well as told to 'pull myself together', 'get out more' and 'go for a walk in the sunshine'. ME has been discussed openly, but never actually diagnosed and now finally, after all these years, they suddenly realise they should have looked into things a lot earlier. Unfortunately, its a tad late, considering I now have neurological problems that are there permanently, suggesting I could have gone through the Relapsing Remitting stage of MS without even knowing I had it and am now looking at the progressive stage.

[thirdfromleft]

garlic

Agree totallyI am seriously pissed off over the kind of dismissive attitude you're referring to. There are some dinosaurs around here who think it's smart and funny to pick on posters describing their pain, to ignorant in their attitude to realize the hurt they cause in their bullying.

I need to go take a chill pill.

[FoofFighter]

The Spoon Theory

YABU.

People really do need to remember that not every illness is visible and not every person with the same illness will behave/suffer with it/cope in the same way.

I don't have Lupus/ME/CFS/Fibro but I have a diagnosed/documneted spine problem and still have my doubters apparently! So I understand how you all feel. This is a thread I wrote earlier www.mumsnet.com/Talk/_chat/1418518-Didnt-know-where-to-post-this-sad-been-accused-of-being-a-fraud

[Hebiegebies]

Thank you FF for the link

[FoofFighter]

YANBU even

[Tanith]

I must admit to not fully understanding exactly what ME meant until I read Diana's Story by Deric Longden (who also wrote Lost for Words about his mother's dementia). Diana was Deric's wife: she had ME many years ago before most people had even heard of it.

I'd recommend it to anyone who believes that ME doesn't really exist outside of the patient's mind. Well, actually, I'd recommend it to anyone at all :)

[Diamondback]

SoozyWoozy - to clarify, I do believe that many/most people diagnosed with CFS have a genuine medical condition (ME, Lupus, Fibro, atypical MS), but that Docs are using it as a catch all for anything they can't diagnose or for people who they believe are mentally, rather than physically ill (ie, are lethargic due to depression and are imagining they are physically ill).

The British medical definition of CFS is that it is a psychological problem.

[Nibledbyducks]

I have FM, ME, and joint hypermobility, It's horrid and I'm sick of never having enough energy to keep my house clean and not being able to do as much with my children as I should, not to mention my garden. I have turned into a horrible housing association tenant whos home is always a mess and nowhere near as clean as it should be. I try and pace myself, but what do you do when you always need more energy than you have? :( (sorry rant over).

[Nibledbyducks]

I have FM, ME, and joint hypermobility, It's horrid and I'm sick of never having enough energy to keep my house clean and not being able to do as much with my children as I should, not to mention my garden. I have turned into a horrible housing association tenant whos home is always a mess and nowhere near as clean as it should be. I try and pace myself, but what do you do when you always need more energy than you have? :( (sorry rant over).

[Nibledbyducks]

oops

[moosemama]

I think that was certainly true in my case Diamondback.

All the years I was fobbed off and told I was just being a whinger etc, even after the first lot of lesions were found on an MRI, as they were put down to atypical migraine damage. It was only when one particular neurologist decided to talk through my health/life history with me that she noticed the pattern and ordered another brain scan and other tests. It was all there in my medical history, but no-one bothered to join the dots. I only got sent to that neurologist because they thought I was having TIAs, one of which dh had the foresight to catch on video on his phone.

As you said, the UK guidelines for ME were drawn up by psychologists, who therefore classified it as a psychological problem, whereas in Canada etc there are actual diagnostic guidelines and criteria and its considered a neuro-chemical illness.

[LeBOF]

Weaselbudge, has she ever been assessed for ODD? That can be very debilitating. It could be an adult form, maybe?

[garlicbutter]

Oh, ducks, if you can't whinge on a whingeing thread where can you?! Fill yer boots

I'm going to finish cleaning my oven tomorrow (I hope.) Four days after I started.

Oh, I didn't know that about psychology/CFS/ME in the UK! At the moment I don't much care tbh, as my first shrink was pretty good at explaining the interdependent roles of neurotransmitters so, whilst my only diagnosis for 5 years was depression/ptsd, it was always from a holistic point of view. And my CFS referral was made by a shrink.

I think I may be having MS symptoms - no persistent tremors, though - but that'll come in time, I guess, as I'm still having tests at a leisurely NHS pace. And am way too tired to be writing now See you all around lunchtime in the morning!

[SchrodingersMew]

I have FMS, EDS and POTS.

I am constantly knackered and joints keep bloody popping out then I stand up and nearly fall from dizzyness.

I'm seriously glad you have posted this thread GarlicButter as not too long ago I got properly flamed on here for not bucking up, getting a job and stop relying on my Gran to help me so much. Was also being flamed for posting that I we needed rehoused as we live in a high rise with constantly broken lifts. Arghhh, getting into a bit of a rant here! I also got lots of support too that I was very thankful for.

Anyways! I wish people would start takimg these illneses more seriously, there are so many people suffering and not many get close to the support they need.

[LackaDAISYcal]

Went off for an early night last night as I've been having a bit of a flare up.

Verylittlegravitas, I'm on 400mg of plaquenil and am doing Ok with it. They're still playing around with my meds to get the right combo and I thought it was working, but then this flare. But, I started back at work a month ago (a home care asst on the twighlight shift) , and DD has had hideously bad chicken pox so I've not had much sleep over the last week, plus my last steroid injection was 8 weeks ago and Is probably wearing off.

Hebiegebies, your energy level description makes great sense and I hadn't considered how much of an effect using up emotional energy had on my overall energy levels.

Will catch up with the other posts later, but had a thought that maybe we could ask MNHQ to move this to general health; a much fluffier and safer place for what is shaping up to be a nice support thread :)

[CrazyCatLady13]

I remember being diagnosed with FMS by a rheumatologist about 10 years ago. When I asked what could be done to treat my condition, he said 'go swimming'!!!

Now on a cocktail of neurontin, venlafaxine and co-codamol. Was on Fentanyl (morphine) patches until about 18 months ago, but they really knocked me out!

[Groovee]

I have Fibromyalgia. I was diagnosed in 2009 and it answered a lot of questions. It probably stems back to 3 boughts of Glandular Fever in my teens.

I went on a Lifestyle Management course about 6 months later. It helped me gain control of the condition an be in charge. I still get flare ups but I'm learning to listen to my body and take control of resting etc.

I still manage to work too. But I can't say no there.

But sometimes it would be nice if someone would listen to me instead of expecting me to be there for them with nothing back for me!

But unless you have experience, you will never understand how we feel or how we struggle.

[CrazyCatLady13]

I wonder how many of us manage to work - not because we're able to (I know my home life suffers hugely due to working full time) but because we are unable to claim benefits, and also because of the perceptions of other people?

Pressure from others (you don't look ill, why don't you work) can be massive, and I know that even my family don't really understand what it's like.

I have two choices - work, but have no energy for anything at home, or don't work, have energy to do housework, spend time with family etc but have to put up with people's comments!

Anyone else feel like that???

[GetOnYourDancingShoes]

I've had ME for nearly 15 years and have heard most of the comments and am sick of explaining my condition.

Yes, I am depressed too. I lost my career and have to juggle my energy levels to have any kind of life with my husband and family.

It is a shit existence. Existence...not life.

DH married a lively, interesting woman with a good job. Now he is stuck with me and ME.

[Groovee]

My concern as a nursery nurse is loosing the job I love. I get low rate DLA. But have been diagnosed with an extra rib in my neck which has been causing numbness. If it continues will I be able to do my job properly? I have found when I am working I feel better within myself.

But the lazy bastard comments get to me big time. I am not lazy.

[CFSKate]

Norwegian breakthrough in ME-Research

This research was presented at last years ME conference - details of this years conference- ME medical conference June 1st London
www.investinme.org/index.htm

[lesley33]

Just to say as well, I think people without experience of it have difficulty understanding any chronic illness. I have genetic lung problems. Sometimes I am fine, sometimes not. My DP has lost track of the amount of times she has gone out and when people ask where Lesley is, she reples she has a flare up of her lung condition...and people are surprised. It is as if people "forget" you have an illness.

I know people don't disbelieve my illness - I have holes in my lungs, so it is clearly an illness. I think they just don't get it. And these are nice caring people who can be really considerate in so many ways. So it is not surprising that when people have an illness like ME for example where there are people who doubt the realness of it, that friends may not be that sympathetic.

tbh the only peopel I find who really get it are others with chronic conditions...whatever they are.