Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Have you tried CAB? They are usually good for financial advice. They might be able to do a qualifying benefits check to see if there are any other benefits you are eligible for but don't know about.

Was it Grockle, that was going to Occ Health today? Hope it went well.

The income-related benefits are beyond a joke. They make me really angry. It is absolutely not acceptable for the state to decide that someone doesn't need any money of their own because their partner works (and it can be as little as 16 hours on minimum wage). It's degrading and potentially dangerous. Lots of people have controlling partners, but the state seems to think it's ok to leave someone utterly dependent.

When H finished his PhD he tried to get JSA. He couldn't get contributions-based because you don't pay NI contributions on a PhD stipend. Because I had a job, he couldn't get income-based JSA and was left entirely at my mercy. It's just not acceptable. Even more annoyingly, the state were happy to assess us as a couple when it suited them, but we were individuals where it also suited them. My income was mine alone when it came to income tax (and personal allowances) but it was shared household income when it came to benefits. Denying income-based JSA also let's the government hide the real unemployment figures because you are not going to subject yourself to signing on if there's no benefit to it. Same with income-based ESA, they can pretend that the numbers of sick and disabled people are much lower than they actually are and go about talking about workshy scroungers.

Sorry things are so had crapbag. It's horrible to feel stuck.

I feel bad, I havent been back since my little winge I didnt mean to moan and disapear, I've just had a few really bad days and havent been up to much.

I am amazed at some of you talking about job and working, how do you manage it? I thought I 'wasnt that bad' but holding down a job, even if it were just a few hours a week is beyond me!

I'm sorry your struggling with finances Crapbag, its not a nice feeling. I have no advice, but agree to go and see the CAB they have always been great when I've seen them and they are currently helping me out with a DLA claim (not expecting it to be granted, but need to start somewhere)

Hi Beebies, don't feel bad! Sorry you have been having a difficult time. I only work a little (6.5 hours a week) but know it would be silly to increase this just yet dispite being much better than 3 years ago when I resigned from my other hours.

Not sure how to feel. I have been discharged from the CFS/FMS team as I most probably have another fatiguing illness (OI/PoTs- awaiting letters) and only those with no other fatiging illness can be seen by their team. Two years to get this far (after CFS referral - 4 years ill and I was so looking forward to starting physiotherapy and GET (I was not well enough when first assessed and then had to wait for cardiology tests its taken that long to get this far). Now nothing. They said I could not have a CFS/FMS diagnosis if I had a PoTs diagnosis. Has this happened to anyone else? I thought it was quite common to have both.

Magso that is ridiculous :( you are right, it is common to have both. I was diagnosed with both CFS and POTS on the same day by the same doctor FFS! There is an overlap in symptoms but they are both illnesses in their own right.

Ask what criteria your specialist used. Is there any chance an understanding GP could refer you to another area? I got referred to London even though there's a service much nearer in Sussex - but the GP felt London was better.

This is the problem with the different criteria sets that exist for CFS - there is inconsistency according to where you get seen and it affects what treatment you get, if any. For example under one set I would not get dxd with CFS at all because I have had severe depression in the past. Even though it is understood that depression/abuse etc resulting in poor stress response can leave your body vulnerable to CFS

I am angry on your behalf magso.

Well GET derives from a model where CFS completely psychiatric (buzzword is actually psychosocial - you're behaving wrong, doncha know).

In this model, there is no organic illness, and you can exercise without coming to harm. The idea is to put you on a low level of exercise that doesn't make you too tired/symptomatic, and then crank it up saying, "See, that wasn't so bad was it," until you are physically much fitter and stop having these faulty beliefs that you're ill, because you're clearly not.

The motto of GET type treatments I was given was "Don't follow the symptoms, follow the plan." Because the symptoms are all mistaken psychosomatic manifestations, and not a sign of physical harm in progress.

If a medical team believe in this model, POTS is a bit of showstopper. It's much harder to write off as non-organic, and it clearly does involve the heart responding drastically to exercise and posture. So I can entirely see that a team which thinks GET is a good idea would claim you can't possibly have CFS and POTS: it undermines their model if CFS-sufferers have organic illness.

If on the other hand you have a medical team who think CFS is something they don't understand, but here are some diagnostic criteria (based on exclusion, not positive identification). And POTS is something of which we don't know the cause but which has spedific diagnostic criteria. Then the medical team will be comfortable that the two can easily co-exist. Or one can even say that POTS is one of many conditions under the umbrella of CFS, which after all was only a dustbin diagnosis in the first place.

Well that's my understanding, anyway. Sorry, hope my cynicism doesn't damage anyone's hope, if that's what's keeping them going.

That's all really interesting.
But just out of pure curiosity what's pots?

Popping my head around the corner. I am desperately low on spoons. I have bacterial bronchitis and I feel so poorly. :(

I parked in a disabled space today to collect a prescription and someone looked at me and said "you are an utter disgrace". The man walked off before I had a chance to defend myself or show my badge. I was feeling low anyway, so I sat in my car and sobbed. I haven't told my family but I need a hug. I have no reason to feel ashamed but I do. I'm know I'm young and look healthy but right now, I couldn't feel less healthy.

Oh crashdoll! Hugs hugs hugs.

There are some right arseholes out there. And you must be feeling utterly grim with the bronchitis as well.

POTS is Postural Orthostatic Tachycardia Syndrome.

May ring lots of bells with some here...

Ignore that arsehole. I hope he gets an invisible illness so he bloody knows what its like.

I frequently turn up at school barely able to keep walking. I make myself walk because I don't want to use the petrol and its the small bit of exercise I get, plus it gives DD a stretch of her legs but its all uphill on the way and loads of steps up to the school so by the time I am at the top, people must just think I am terribly unfit! Some of the mums know though so they understand, and so does the class teacher and TA when I stagger into the classroom sometimes.

Arbitrary yes it is shit that we aren't allowed any money of our own. DH can't exactly give me any anyway, his wages don't even cover our outgoings and I give him money each month!!!

Yes. It makes it worse when the income they've decided is 'sufficient' for the whole household doesn't cover the bills. Will you be able to get any tax credits to help with the shortfall?

We get some CTC already. I have been doing the online calculator and it is coming out with a different result every bloody time!!! The first time we actually would end up £40 a month better off so I was relieved and that would have been fine, then it was only upped by £40 a week and we will be losing £112 a week so not enough to cover what I pay out and after all is paid out, we would be left with £200 a month which would have to cover things like dentist, glasses, prescriptions, clothes, uniforms for the DCs and their shoes etc. Nothing left if something breaks (our dryer has broken and my washing line snapped today). I have done the calculator again and it upped our tax credits but was still less than what we get now, then I used a different online calculator and it only increased our tax credits by about £30 a week so there is no way at all to know!!!

I did read that when your income is reduced, the tax credits office ignore the first £2500 so you get nothing for that bit, only what comes after that. So people can apparently afford a reduction in income by £2500 and they won't top it up. My benefit is about £5600 a year though so it would increase but there is no way to find out by how much. It also says that if you are disabled and getting certain benefits then that can increase your award. I currently get DLA (lowest care) but that is also being reviewed so they could stop that as well.

You'll drive yourself nuts with the online calculators. If you have a CAB that you can get to, phone them and ask for an appointment for a 'qualifying benefits check'. This will let you know what you're entitled to and roughly how much.

If you have 14 or more prescription items in 12 months its probably much cheaper to take out a pre-payment certificate if you haven't already. You might save a bit of money there.

If you get tax credits you might get a prescription exemption certificate which means you don't need to pay.

Crashdoll... What an ignorant arsehole. There is no educating some people. ((((hug))))

Fuzzpig thank you, perhaps I will discuss it all with the GP. I am well enough to travel now whereas 2 years back could not have managed travelling to a further hosptal. I am certain I have had some degree of OI since puberty, the tachicardia is newer ( I used to have a healthilly low HR and was very fit). It would be nice to have something treatable I suppose. I have got a lot better by following the pacing rules. Surely pacing (ie doing less and for me spending most the day in bed) would make PoTs worse but I have improved.
Rasberries good points-you are right of course. GET is the complete opposite of pacing so I did think it a bit odd. I was hoping physio would help with the stiffness - my back especially locks up all too easilly. Perhaps I should see the GP about physio for my back!

Crashdoll so sorry you have bronchitis. Perhaps you should have had a good cough next to the stupid man who thinks blue badges are only for the elderly. I don't have a blue badge and could not park at the hospital today - why oh why are all hospitals on hills (and have tiny car parks), so perhaps my puffed out state worried the CFS team! I cannot talk straight after activity!

at my local hospital they have put the blue badge parking further away and up a hill! yeah brilliant trying to push myself up there in a manual wheelchair!

Well at least the blue badge parking is on the flat(ish) at my local Gallifrey! Stupid to put it on a hill if a flat area is available.

We get lots of people who don't look at all disabled coming in to collect their BBs from us. I wonder if they face similar judging when they use them, from daily mail reading prejudiced twits.

I will probably never have a BB as neither of us drive and I don't think I have a chance of learning while I'm still ill (I had massive concentration issues even before I got CFS) but I get paranoid just sitting in the bus seats with the 'disabled/elderly' stickers. I am constantly on the alert for somebody about to challenge me, it hasn't happened yet but I still find myself running through retorts in case somebody says something. Even that is exhausting.

YES to the breathlessness, it makes me look so unfit! I am sitting on my sofa right now, if I got up now and went upstairs I would be struggling to breathe/stay upright by the time I get to the top - and that's without one of my regular chest infections on top. It's so humiliating, especially as I am overweight - no heavier than before I got ill though - I am sure people just think I am an unfit fat person

I think my POTS may have started in puberty too magso. I also started hyperventilating a lot (pretty embarrassing in PE lessons) which can be related - when I had my assessment for POTS the professor told me off for breathing too fast which increases the tachycardia. Now, if for example I need the loo at night, rather than just getting straight out of bed - which would have me swaying and out of breath before I even reached the bathroom - I sit up slowly, shuffle gradually to the end of the bed etc, and actually hold my breath for 5-10 seconds if I feel the blood pounding in my ears, and it does keep my heart rate in check to some extent.

Argh I'm such a muppet! DH is already asleep (I was watching a DVD as I didn't want to sleep yet) and I got to the top of the stairs and realised I hadn't turned the light off, so had to go straight down and back up again. It is so pathetic that tiny extra exertions like that take such a massive toll. Got back upstairs and feel uber dizzy and breathing fast and had to make myself slow it down but my heart is still racing a bit. I hate this

On the topic of hyperventilation (maybe it's just me?! Would be interested to hear if others do it too) I read that at one point in the past, it was thought that CFS was actually caused my hyperventilation or 'overbreathing'.

By, not my, sorry

Shattered today. Took my son (8) to pediatrician with suspected ASD yesterday... brilliant appt, immediately referred to all the services he will need...OT, PT, etc, and told probably Aspergers but not a formal diagnosis yet. Pleased but a bit wobbly emotionally.

Needed a treat for us both afterwards so went to a couple of shops for a bit of a wander and bought him a few bits...fatal! Am absolutely dropping today. Thought it was the aftermath of so much tension around his diagnosis but think it is probably too much bloody walking. It didn't even feel too much at the time.

Have new cleaner starting today and the house is a tip. Cannot even walk through the children's rooms...must get on before she comes.

Plus it is Friday...a good enough reason to be on our knees, eh, ladies?!

well i have just completed my 1st week back at work doing 30 hours... yesterday i went to bed at 2pm, got up at 4.45 when DP and DD came home and was back in bed for 7.30pm.what a shit work life balance i have...but i need to work cos i need the money.i will just have to see how i go.

I cant remember who asked if mum appealed, but she did. im not sure where she is at atm, but she certainly cant work!!!

Hope you all have a few spoons to get you throu weekend

has anyone heard from GROCKLE????

Have a wonderful weekend ladies. I know I don't post much, I honestly can't up with the pace of thread! But I do check in every now and again.

Fuzzpig I watched a row in our local train station car park yesterday about BB holders, someone had parked in a disabled bay to collect their better half, one of the commuters took exception to this and pointed out that he was in a disabled bay with out a BB and it was wrong and he needed to move, anyway it reminded me of the time my mum went shopping and took my younger sister who's disabled and BB holder.

She has learning difficulties and severe mobility issues (she uses crutches to get in and out of the car then is in a wheelchair), some women walked up to my mum in our local multistory cark park and verbally abused her and my sister because my mum had parked in a disabled bay and my sister didn't look disabled. Now my mum is tough as nuts but she was so upset after this that she came straight home with my sister in tow. I've never forgotten it.

Fuzzpig I use a type of breathing taught me by a respiratory physio -to reduce overbreathing and reduce the dizzyness. I tend to forget to breath extra so for me it helps prevent the sudden wobbly legs caused by low blood oxygen. It involves breathing out with pursed lips. For me (underbreather) I have to blow out to exhale, for over breathing just breathing out gently through pursed lips slows down the breathing. It looks a bit silly but not as silly as passing out!
Building good your paediatrician has oganised the right support. It can take a long time to get a final Dx, although it shouldn't. You are entitled to feel a bit wobbly!