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

[SirBoobAlot]

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

Welcome solo!

I find standing difficult - in some ways harder than walking ( slowly). How do other people manage queues?

exactly my problem magso - can't stand for longer than a few minutes so can't do queues at all.much better when i start to walk again.

There is always a bit of a wait at the gp until the the receptionist can acknowledge you and release the door to the waiting room. I have to lean on the wall and will my legs to behave and hold me up!

Oh thanks for that Snaplegs :) Didn't know I could do that! Will call them today.

And yes, standing still is much more difficult, and more painful. If its bad enough (and I'm feeling confident enough), I sometimes ask people if they wouldn't mind me going in front - I normally only have a few items anyway as I can't carry much. Sometimes I sit on my stick. Have worked out how to angle it that I can lean on it and take some pressure off for a small time. Looks very ungainly, but does the job!

Try and see if you can get a stick that converts to a seat also ask for a perching stool for kitchen - it's what allows me to carry on cooking!

Thanks for the welcome!
I do not use a stick (I use a pair of poles when out and about but not for shopping) but use the shallow trolleys even for a few items. I wish they had an adult perch on the trolley! I am quite staggery at times and people give me odd looks (they think I have been at the gin!!)
Ds is getting respite care once a month which he is enjoying and we get couple of hours DPs a week to help with respite over the holidays. This is all fairly new (and it has taken some organising)but it makes such a difference! He goes to school on the school minibus (he goes to a sn school) which is brilliant for us.
I am doing much better at the moment - joints are not as hot and sore and balance is not so bad, so am able to do more. Hows every one else?

WRT to the queuing, I wait until it is short, or shift weight constantly from leg to leg. Sometimes I have started to feel really dizzy and lightheaded and just left the queue. If DH is there, I get him to queue while I sit down. I tend not to go places that would have queues on my own too much. I too find slow walking much easier than standing still, especially when they shop is so hot, nightmare at this time of year!!

Yes I get light headed and dizzy too. But the main problem is my achy putty legs and back!
The first Gp I saw with my failure to be able to function blamed I am depression and panic attacks but I am convinced otherwise. I did not feel depressed/ tearful/ fearful - until being treated as depressed and or malingering. My usual GP is more understanding.

its something to do to with our blood pressure when standing.it drops dramatically which explains the dizziness.

Shops this time of year are horrible.

Magso yes mine was put down to mental health issues as well. Was in a mental health hospital for several months.

Sharbie - postural hypotension is the medical term for a drop in BP on standing but this isn't the cause of these symptoms in all CFS sufferers.
I only shop when DH is with me and regularly take a seat whilst he does the till bit - worse for me is when we go away to a landrover show and he wants me to go round with him - love him dearly but it really takes it out of me!
I hate getting tired just eating - I end up grazing then because I get more hungry!

Magso - I remember the very first dr I saw said " are you depressed you don't look very happy?" I hate that everyone assumes it is caused by depression as opposed to us getting depressed because of our condition

do you know what is the cause of it then mrs s ?

Sharbie - no I dont for some it is ph but I know in my case it's not as I have been tested, I have also had all clear from ent (ear nose throat) specialist so I know it's not inner ear which is another cause. Some people have proprioception problems but that's hard to explain using my iPhone too much to type and can't link !!

thanks i will google

MrsS - oh yes, the getting tired from eating thing! I get so angry with it at times. Which is silly, because it won't change anything. But its the silly little things, that you did pre-illness, that you never really thought about and took totally for granted, that make the difference.

I'm feeling a bit miserable as I just had to crawl up the stairs. Tried to walk up them but just wasn't happening. Am looking forward to having my bungalow - no more stairs!!

yes boobie bungalows are fab

bottoms - just managed to type a really long post on proprioception issues and lost inter net connection

OK summary - proprioception is knowing where your body is in space and time eg being able to put your finger on your nose without looking in the mirror. Problems with it can cause balance issues - my consultant has only just said this may be the cause of my balance problems. My rehab instructor is working on core stability with me (or was pre pregnancy)

I have balance issues walking, on stairs, on escalators, getting in and out bath etc.

My occupational therapist has organised rails, shower stools, perching stools etc which all make life "easier"

I hate insomnia.

Me too. Why is it that an illness that makes you so exhausted causes bloody sleep problems.

I can't seem to get to slepp before 11-11.30 pm, then wake in the night and have trouble dropping off, then wake early when DS gets up with DH and only drop off again just before DH leaves for work and brings DS upstairs. Grrrrr.

I did find though that stopping going on the net at least an hour to 2 hours before bed helped slightly. I can't switch my brain off at night and being on the computer just before bed makes it sooo much worse.

Does everyone else have the switching off problem, even when you are not actually worrying about something?

And what are everyones main symptoms? I noticed there are a few here that I don't seem to get or get as bad. I know everyone has it differently so it would be interesting to see what the common symptoms that we all have are.

How personalities are here? particularly before the condition started as I'm interested if it is deffinately based on a certain type.

I'd say I'm anxiety suffer, high achiever but not necessarily successful hence get extremely sad if dont reach my goals. Dont take personal critisim well and really take it to heart. Prefer to avoid confrontation - get shakey. Medium depression in past. Want to be accepted an liked - easily upset in other words. But can be very hard and strong willed on the other hand.

I remember when I was in school (early teenage) having pain points if slight pressure applied on certain areas.

Mine problems started after a fab holiday and suddenly feeling unwell and exhausted (27yrs old) but slightly before that started to notice a slight intolerence to alcohol.

Hmmmm, some definite similarities there!!

I too an highly anxious and don't take critism well. Desperate to be liked by others, loathe confrontation and I am just likely to cry instead . Had depression before I got M.E. (about 5 years before). I like to achieve well but I haven't achieved anywhere near what I know I can and I know I never will due to not knowing what I actually want to do and instead (I used to, when I worked) settle for an easy job that I could do with my eyes shut, then end up frustrated and bored. I am also strong willed once I want something of have made my mind up but I am very indecisive and have real trouble making any sort of decision. I am also terrified of being alone (in life, not the odd nice time to myself).

Mrs Snaplegs - I wondered if it is my proprioception that is malfunctioning as I feel like my knees/hips ankles dont work properly and struggle on uneven ground and steps and changing direction- so I look like a toddler ( arms our, wide leg waddle bump into things!). It starts off OK but I get unsteady as I tire.
DO others keep running a low grade temperature? ( I know the GP will say it is my uhm age!)
Character wise well I suppose I have some similarities - I hate confrontation too. I have had to develop a thick skin and fight for my son - but it is not natural for me!!