Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Thanks all. I'll go back to the GP, I'd given up as they were so unhelpful.
I'll also investigate the magnesium magso

I'm feeling a bit better today. Still sore, but energy levels feel better. One positive is that the recovery has seemed quicker this time. But I know that I'll have to be really careful to avoid triggering it again.

I know what you mean about social situations. I go, but flake out really early, and miss the bulk of the evening. It worries me that people will stop inviting me though, so I go. But I'm probably not the most fun anymore, and people keep asking about my health, so it seems to dominate the night.

I kind of want people to ask me how I am, but I don't actually want to be an object of pity, so I developed a script...something along the lines of, 'Oh, you know, I'm quite bad at the moment, but mainly I'm absolutely bored rigid with being housebound so much of the time so please tell me all about how you are and entertain me!'

The state of the house really bothers me. It's always been pretty untidy, but I used to deal with it by blitzing, but I just can't now. DH does his share, but it's really not keeping on top of things at all, and the place is in chaos.

But there was a thread on here yesterday about a website called Unfuck my Habitat, and I had a look on there, and it was full of really useful advice, including a section on how to manage when you have a chronic health problem. I have downloaded the app, and am hoping it will help me get on top of things.
We have talked about hiring a cleaner for a couple of hours a week, which we can't really afford, but would at least mean the hoovering and floors got done. I have two grown up step sons at home, who don't pull their weight at all, but do work, so I have told them they are paying for at least half the cleaner! But the house needs to be tidier before we can get the cleaner.

It just seems so ridiculous that a virus could have made such a mess of my life!

The cleaning is a major big deal. You just don't realise until you can't physically do it. I give my husband and the cleaner the routine tasks because I have to do all the non-routine stuff which takes it out of me plenty.

Yes, cleaning is horrible! I'm been completely beat today. Yesterday there was a local event that we could see some of from our house, so we sat outside and watched. It apparently took a lot out of me -- I hadn't expected it to. The house is an absolute wreck because I've working home all week and watching DD at the same time, and so if she was happy I let her be. There's stuff everywhere. I figured I'd clean up on the weekend, but yesterday there kept being interesting things outside and today I could barely keep my eyes open. I locked myself in a room where DD was safe and semi-dozed on the floor for most of the day. Now trying to get up the energy to make dinner.

And hi, fuzz, I think we met on a thread previously when I had a different name -- you were really nice and helpful :)

(Ugh, and now I've made the dubious decision of giving DD cheerios. She is not liking the suggestion that she make a game out of putting them back in the bowl, so I had better do something about that before we add crushed cheerios to the decor...)

I have a cleaner now too ( although part of the chaos is due to first her then our holiday), for 2 hours a fortnight. It not a lot but she does the routine chores like the bathrooms and floors (sometimes the windows if there is time) whilst I do everything else as and when I can. It doesn't help that ds is very messy ( he has SN). But like you Altogether Andrews it bothers me big time! Our house is too small and cluttered to have a lot of mess and muddle! When my home help first started ( after an op- the house got particularly bad in my absence so there was a backlog and me too unwell to do much) she basically helped me get the place more streamlined. We kind of did it between us. Many jobs are too physically hard for me alone. She also knows lots of short cuts that are maybe not too environmentally friendly (like cleaning the windows and mirrors with paper towels, the leather sofa with baby wipes) - but- needs must. I have had to accept ds room is always going to be cluttered - he just cannot do tidy! I think it is perfectly acceptable to share the cost of a cleaner with working adults in your house.
Fuzzpig nice to hear from you again. I am still trying to get my POTS diagnosis sorted and am waiting to see the CFS lead clinician to see if my CFS diagnosis still holds. Did you have to go for a tilt test? Or did they dx on 24hr BP and pulse results alone? I don't think there is a tilt test facility locally. Personally I think I have both conditions ( not everything can be explained by POTS) but the CFS OT/physio team discharged me into cardiology so I am back in limbo land.
Like you building I email and text - I have an old model I pad which is great for that as it can be used whilst supine.

cleaning with a chronic illness

This is the website I mentioned above. I found it quite helpful.

My ears 'pricked up' with the mention of housework :( I have clutter and chaos and cannot seem to get anywhere with sorting it out. It doesn't help that I hoard. I do try to get some done, but seem to go two steps forward, one back, which rapidly turns into a worse than before nightmare.
I have a 15yo lazy arse Ds and a 6yo Dd. They don't help at all and I'm sick of the mess.
Going to look at the link tomorrow...after work. First day back andf dreading it.

Hello,

Welcome to newbies. Sorry you have to join us. This is a lovely thread, full of understanding & support.

So sorry things are so bad newest. I get bedbound but for days rather than extended periods of time. I have long phases of being housebound too.

Candy, that would upset me too. I hate using my crutches because I feel like a fraud. If someone said something to me, I'd crumble.

TheAccidentalExhibitionist, I can't tell what is a Lupus flare & what is FMS but they vary greatly in how bad they are and how long they last. I get bad breathlessness too.

Altogether... how do you manage? You just do! It's very, very hard. I'm a lone parent, with a demanding job that I can't always do properly.

Sorry RichTeaAddict

Friendships & chronic illness are really hard. Good friends will understand and, hopefully, new friends who are worth being friends with will understand too. Online friendships are brilliant & help me keep my sanity. In fact, some of my best friends are FB friends... I don't go out for coffee with them but they are always there when I need to talk, often at all times of day and night.

I don't cope with nights out either, unless I am very well & it is dinner, where I can sit & then go home.

You;ve reminded me that I need to text my cleaner! She comes as & when but usually about 2 hrs a fortnight & it makes a huge difference to my quality of life.

For those of you who don't know me... I'm 35, with hypermobility, fibro & lupus plus Meniere's disease, chronic insomnia & tachychardia. I'm currently working part time but haven't done a full (4 day) week since July. This week is the first time & I'm already in pain, beginning to struggle with sleep again & feeling stressed.

My memory is terrible atm. I forgot to take DS to a party yesterday I have a terrible cough which makes my chest very tight & my heart races more than usual. I can't breathe when it happens & it's always bad at night & when I am moving around. If I sit still, it's not so bad. DOn't know what to do.

Aaaaaargh cleaning! What's that? :(

My house has always been messy. I grew up with hoarder parents in a much-too-big house and now have a much-too-small house which doesn't cope with all the clutter we have amassed particularly in the last few years. There is a minimalist/decluttering thread which has been my hangout while I've not been here - this illness has finally brought it home to me just how much harder all the clutter is making our lives. It's awful, and I have finally become ready to deal with it. I am proud that I am finally confronting my messed up attitude to Stuff, but as you will all understand, I am SO frustrated because I can't actually do the massive blitz I am mentally ready for. :( So instead I have been trying to do a little bit whenever I can but even a little bit really takes it out of me. It is annoyingly slow but I'm trying to look at the long term benefits.

Magso my POTS dx was very quick. I had already read up a little online and was pretty sure that was what was causing some of my symptoms, but I didn't mention the name when I had my CFS assessment, just made sure I told him the symptoms when he asked. During the physical assessment he just compared my HR/BP lying down and then straight after standing up. That was it. I think it makes a difference what CFS specialist you see, IIRC there are some that use different diagnostic criteria which won't diagnose you if you've got certain other conditions. I am very lucky that I saw Professor Peter White who seems to be one of the experts (although from a bit of googling a while ago it seems he can be quite unpopular due to his faith in Graded Exercise Therapy) and he was really nice. He also said that although I clearly had POTS it wouldn't explain all the other symptoms that CFS did, and saw no issue with the two being dxd together.

By the way I had had a 24hr trace (ECG, not BP) in mid 2011, which in hindsight was after I had got the CFS. At that time my POTS symptoms had become particularly bad, I couldn't make it upstairs without feeling like my heart would burst etc. The trace was clear, and the cardiologist discharged me. I said "does that mean it is all in my head?" and he said "no, it just means it is not in your heart." I just put it down to stress as this was around the time I was waiting to start work and there were problems with references etc, and it did get better for a while after I started my job. So no, the trace was not really involved in my dx (but I did tell prof W about it).

So, my news:

Summer has actually been pretty good overall. Spent the first few weeks doing too little and the second half doing too much, so next year I will try to plan things more evenly. It was worth it though - did a couple of London trips (cleverly tied into my hospital visits :o) so DD could go to some galleries (she did an artist topic last term and loved it), went on a Thames riverbus etc. It was great to actually do nice things, but at a gentle pace (my parents have been very understanding of my need to NOT rush round every painting etc).

DH passed his NVQ in fitness training and is now doing the level 3 version which will hopefully improve employability, he has also been put on a customer service thing, so the next 9 weeks are going to be really hard work - he will be training 2 days a week and with him already working most weekends, I'm dreading it. I am just trying to keep telling myself it is only a short term thing (although then of course he will hopefully have more work, but at least then he will be getting more money).

I am still doing 12hrs a week (3x4hr), it's not quite permanent yet as my boss gave me longer to decide, though I'm pretty certain I won't change my mind! It is working well, the lack of money is a scary thing but hopefully DH will be able to make up for it. I didn't take any time off over summer and it's been ok as I know I only ever have to do 4 hours and then I have at least one day off.

I have felt a little unwell for a while, like I was on the verge of a relapse, but it never develops. A few weird symptoms like ovary pain, massive mood swings, I even POAS and felt a bit sad when it was a BFN ! Don't know what's going on so I'm seeing my favourite doctor on the 19th - hopefully she won't fob me off or just tell me it's all the CFS as I don't think it is.

Sorry about the essay, I will be back later to explain about the treatment I've had as hopefully it will help some people here :)

Altogether thanks for pointing me to the unfuck your habitat website. I have downloaded the app and spent last night making list and playing with it! It has made me feel as though things are achievable even if I have to take baby steps to get there.
Matilda I have taken your advice and organised with my group of friends that I would have them over at the end of September. This will give me plenty of time to sort the house out without a load of pressure I hope. It also means that I can keep in touch with them and feel that I am doing my part in taking turns to entertain. Thanks

I had been feeling guilty about the kids watching TV etc while I rested. So I downloaded the change4life smart restart app. The challenge for the kids is to spend 30 less a day in front of the screen. It gave loads of suggestions for things for them to do and they did them (games like catch!) and really enjoyed them. I think it was because the computer told them what to do, not me! Anyway we had a lovely afternoon yesterday and it really eased my guilt too. Bonus!
I am hoping to use some spoons to begin the clear out now. I have saved one by getting the shopping delivered today. I have never done this before and it saved me time and money. Why did I not do it before?

Anyway hope there are plenty of spoons for everyone today xx

We would be totally screwed without online shopping always :) and well done on reducing screen time. This is a big guilt button for me but sometimes it feels like the only option! However as DS is starting school in less than an hour (!!!) we are going DVD free Mon-Thurs. Movie night on Fridays. They still get their 30mins iPad time though. It has only become possible by starting the decluttering process as they have easier access to what is left of their toys (still too much - got a long way to go yet), but it is still an endless battle of mess isn't it!

I have spent this morning clearing the kitchen counter tops using the 20/10 mins idea on unfuck your habitat. I feel so much better but reversed the times - 10 mins sorting and 20 mins sitting down. In the end I kept sorting as I sat down. Now I am going to have a cuppa and begin watching " Circle of Friends" which I saved a few weeks ago.
Sorting out has meant I found some crafty bits for the kids to do when they come home tonight. They aren't very messy and they are Christmas decs too!
Hopefully I won't have to pay with too many spoons later - kids have no activities as well

I like the idea of 20/10 for cleaning , modified to 10/20s for me and always! I looked at the list of daily and weekly and mostly we (me for the day to day with some help from the cleaner for the weekly chores) manage these chores. Its the other things that are not on that list (dusting/ sorting out ds toy drawers/ writing the letters/ chasing things for ds ( spent all morning to transport this morning) all the extra parent duties that take up my energy. Also several chores are daily chores here ( the loo - if you have boys you will know what I mean).
Hopefully the man will come to fix my broken washing machine soon!

Fuzzpig, thank you for your reply. I had my BP checked from supine to standing (30/20 drop) and the tachycardia resolves at night (I was supposed to sit upright for my 24 hr tape which I only half managed). I see the CFS consultant very soon so I'll report back how I get on. Struggling with my back at present.

I suppose I should have introduced myself to the newbies. I'm old, with one ds (13) and have been unwell for 4.5 years following pneumonitis/pneumonia and a long stay in hospital. It looked at first as if I had SLE(because of the type of lung trouble, raised antibodies and joint inflammation) but I'm still in limbo land on that one. Then I got a dx of CFS, more recently OH now probable POTS. I was hoping to get help from my local CFS team (OT/physios) but they discharged me due to tachycardia (I nearly fainted on them so I can understand their reluctance to let me join the graded exercise program I was hoping for), but did organise for me to go back to the lead CFS clinician. I now only work one day a week, having failed to get back to my original 3 day week. This works for me and I am loads better than even a year ago. Heavy fatigue, wobbly legs and keeling over are my main difficulties.

hi all would love to join you all. I have an appointment with a specialist on the 25 so I'm hoping for confirmation of diagnosis. the go has said fibromyalgia / ME. I had two months off work after having a cold and returned to work but am unable to work two days in a row as after working a twelve hr shift I'm generally not good for anything the next day. I'm currently of sick after having a bit of a relapse I'm just hoping it will be less than two months as I can't afford that much time off.

Welcome foxy :) grab a chair and settle in. It's often a virus that starts FM/CFS, hopefully you will get the answers you need on the 25th. Have you found anything that helps with the symptoms yet?

I had a rough shift yesterday - towards the end I was in a lot of pain, my hips for some reason. I was limping by the time we left and wanted to cry by the time I got off the bus at home. Ovary pain bad too, hope I don't need to get an earlier appointment at the doctor's as I'd really prefer to see the doctor I know is understanding of CFS (there are some who aren't, to put it mildly ).

I am wide awake since 6 having slept on the sofa (the norm for Mondays as I am often so tired) so I will take the chance to say what has happened at my hospital appointments. I have had 2 sessions with an Occupational Therapist, and 2 with a psychologist.

The OT's main aim is to make my week more balanced. Currently I have crash days (most notably Tuesdays, caused by the late Monday shift) and end up doing nothing at all, but I am finally starting to accept that over-resting actually does make me feel worse. I think that is more related to the POTS, as I spend so long on the sofa (not necessarily lying down) and whenever I get up it is a horrendous shock. So I need to plan things to do on these days. She is insistent that at least some of it be nice things and that it's necessary to use some energy to enjoy life.

I am still struggling with this though and it's going to be harder while DH is doing his training as I need to pick the DCs up twice a week. Fear stops me arranging more things. We also talk about short cuts and not feeling guilty. So what I might do is get the bus home from school - not ideal as I still need to walk a different way but it's not uphill at least. I am seeing her again on Thursday and I'm going to take my diary to see if she's got any advice for getting through this term. A relapse feels inevitable - imminent, even :(

The psychologist is lovely, we have mainly talked about anxiety as this is such a big issue in all aspects of my life. We talk about different approaches - mindfulness and CBT - and look at challenging negative thoughts and changing behaviour in particular situations. We talk about the past a little bit, but not as much as I thought I would need to - but I think I've done so much 'inner work' over the last couple of years that I don't need so much professional input if that makes sense. We had the second session by phone as I was unwell, it actually worked well to do it like that so we will stick to phone calls at least while DH is training.

Also just wanted to link to my new thread 3 positive things - one thing my psychologist suggested was writing down 3 good things a day (whether they be achievements or just nice things that happened to me) as a way of building up evidence to combat the negative thoughts. IF (and only IF - I know stuff like this can sometimes be too much) anyone wants to join in with trying it, then pop over :)

thanks for the welcome i've had a bad night feel like i've hardly slept. lots of crazy dreams, i never used to remember my dreams but now i have weird and crazy dreams every night. and lots of fidgeting just couldn't get comfortable.
the gp has put me on amitiriptlin and that helps, she started with 25 and then upped it to 35 when i was getting lots of pain again i found that for a few weeks after starting them and after upping them that the pain almost went and i was sleeping a lot better and felt a lot better but i seem to get used to them and the good effects seem to wear off.
i've stopped drinking tea and coffee so have no caffeen now i dont know if that helps i just went off them and have found a new liking for fruit and herbal teas.

Hey, just marking place as i havent been on fir a while :)

Hey Foxy, I get lots of really strange dreams too. I never linked it to amytriptiline but could well be. I often remember my mad dreams, too. Luckily they are often stupidly amusing.

Always, well done for getting your mates round. End of the month is a good idea for a soiree. hope your 10/20 gets to be a habit. Once you get on top of things you could feel loads better.

This got me thinking about accepting/ asking people, especially friends for help. It's sooo hard, isn't it? However, I have come up with an extremely long list which includes painting my toenails, washing fox poo off my dog, mopping up my tears and telling me mad, random stuff to distract me. My friends have saved my sanity and preserved my quality of life to an acceptable level.

In return I attempt to look cheerful, show extreme interest in their lives, dilemmas and families. I try not to be a moany old baggage. My closest friends know from my face how bad things are.

I always try to dress nicely and put on some makeup, but that's for me.

How do the rest of you do it?

Can I ask why CBT is recommended for CFS?

I have read that it is a possible treatment, but don't really understand it. I'm tired, sore and twitchy, but not anxious or depressed. I get down sometimes, but that is because I'm tired, sore and twitchy. Is it that the condition can lead to depression, which the CBT treats? Or does the CBT actually help with physical symptoms?

Sorry if the above sounds snippy, I just read it back, and think it might do. One of my issues is that once I'm overtired, I struggle to express myself without being blunt!

It's more about learning to deal with the illness. For example combatting the guilt/need to say yes to everything no matter how ill it makes you, that kind of thing. Learning to deal with others' expectations, knowing when to stop and rest etc... setting goals for recovery. I am also using mine to combat anxiety too but that's because I've had those problems all my life anyway.

Unfortunately a lot of people (including some doctors IME ) think that because CBT is recommended, it must mean CFS is all in our heads, but that absolutely isn't the case, and the real experts know that. It would be essential to see a psychologist who specialises in CFS though, I would think.

Thanks, that makes more sense!

I'm planning to go back to the gp to see if there is anything they can actually do to help. I'm lying in bed with a hot water bottle on my legs as its the only thing that stops my legs twitching, but I'm massively too hot, and can't sleep. Roll on winter!

oh gosh no not winter .I've always been a lover of winter more than summer but I feel cold all the time. the only time this summer I have felt warm is when sat out side in the mid day Sun, so I am so not looking forward to winter