Chronic illness & surviving the relapses. Am slowly drowning, how do I cope? All handholds welcome

[WoodYouBeHappy]

Posting here for traffic & name changed, following excellent MN advice before. Can't talk about this in real life.

Some years back I developed severe ME/CFS following an unexpected virus. Overnight, my life changed beyond all recognition. I lost my career, some friends, my outdoor hobbies, a family etc etc. Some family relationships have been put under severe strain & will never recover. The toughest part initially was being so sick and not having a formal diagnosis or medical support, so I kept dragging myself out of bed -on advice- and carrying on. As we do. Which made me worse

Now I have a diagnosis, I am disabled, virtually housebound and very weak. I have been wanting to write this post for about a year but did not have the strength. Or wanted to admit it I suspect.

I wear a HR monitor (am tachycardic with upright movement) have orthostatic intolerance, (poss POTS) vertigo, constant pain managed with medication, severe fatigue, multiple environmental sensitivities etc. Having visitors is extremely tiring (& triggers adrenaline spikes) so I am pretty isolated.

I've never been ill much & it has been a real shock. I was always the carer for everyone. I am was the strong, independent, reliable one who gets things done. I have been forced to rely on DH who has been my carer outside of work hours and friends/family to get me to appointments when I am upright. I HATE MY HORIZONTAL HOUSEBOUND LIFE and it has taken me a few years to accept the changes (possibly at the end of the grief cycle now?).

Each week I think I am beginning to feel a bit better and then I have severe relapses where I feel like I have the flu, struggle to move & cannot cope with stairs. I have to live upstairs or move downstairs (with a wee bottle- no downstairs loo) and focus my energy on getting to the kettle and microwave. I've even asked the hospital about being catheterised....
I feel so very very sick & begin to hope that I won't wake up the next day. This passes as soon as I begin to feel a bit better

The crux now is that DH can no longer manage the care work/cooking, as well as keep his job. We have to hire a carer. I DON'T WANT ONE I am a private person who wants to be better and do it myself! Even having a cleaner the last year has been odd.

We are both very positive people and good 'copers'. Each week there are small signs of a recovery and we postpone the 'getting a carer' plan in. I would feel such a fraud . But then I relapse again and realise that we have to find the finances to hire in help. I've advertised a bit locally online but no response. I have to press on with it though for the sake of my dear DH.

Does anyone have any advice about organising a carer/& or cook for a proud, stubborn independent girl? I am having trouble accepting a 'stranger' into our home and using some of our limited finances. I need to reframe this don't I?

And how do I accept my new life and survive the relapses where I just want to die?!!! I am not coping with this roller-coaster each week! (have tried counselling and CBT and meditation, alongside the bloody NHS recommended Graded Exercise Therapy etc).

NB: Did not put ME/CFS in title as I am aware that some still do not accept it as a valid illness. Sadly I am living (or existing?) proof that it is.

Hi all,

We're just sending this over to general health so that it doesn't disappear.

Love and strength to you all

Thank you Lorna. Need bucket loads of strength to go round us lot

Thanks for the move and lorna

I'm struggling with the increase in pain meds. It's made a difference to the pain - less of a hit by a bus feeling, but I'm so exhausted. Slept this morning after getting the dc's out the door and made it up for breakfast at 3.30pm.

I don't remember feeling so groggy last time I increased it - I'll give it a week to settle down.

Yes I remember seeing that thread before - lots of useful info - especially for invisible illnesses.

Haven't even touched my pip application today. I have heard air the first appt being held miles away - seems like it's a bit of a test around mobility

Roll on tomorrow - hopefully some of the fog will lift.

Struggling with trying to look after kids and cfs here. Posting to read the thread properly later.

Hi welcome worm good luck with rest of afternoon

Tackling ESA now. Urgh . You'd think that after filling out eleventy billion dratted forms I could remember my postcode/medication/Dr number etc My recall is shot.

Just remembered, I took photos of my PIP application form No idea where they are though. Questions are different & conditions change too & I get so muddled.....

Where is the strong, capable, fully-functioning, efficient worker of my old life?!!! I wish she'd come back. I often wonder if she's gone for good?

So busy with pity & frustration, forgot to say Hi to worm. Sorry you're struggling

Missis 3.30 pm? . I upped my painkillers last week & the woozy affect is just wearing off I think. Still sleeping solidly til 9.30 am. But I only increased the Ami by 10mg

She's still there wood just hidden from view at the moment.

I've had some mental clarity this morning so have nearly got the pip narrative done.

I'm a bit confused about whether to put percentage of days I can't do things - ie atm 6 out of 7 days are mostly bed bound therefore can't prepare food etc. Is it better to be explicit like this?

The cab guide talks about quantifying good and bad days (this must be a better day as I remembered the word quantify :o).

My welfare advisor said not to put down info about better days as they'll read this and assume this is gospel.

You could phone the dwp and ask for a copy of your initial form and your assessors report. This might help with reassessment.

I asked for a copy of my Esa medical assessment report (esa85) . I also asked for the ESA65 form (the one that goes to the decision maker) but haven't yet received a copy. I'm not sure if it exists as I was placed straight into support group.

I can't even remember where I put my folder of ill health paperwork so you're not alone

Cheers Missis

Good advice re PIP. We were so naive and far too optimistic about what I could do (early denial days). Have just tried to find my PIP stuff. It's either vanished or I never took photos in the first place

I think you're spot on about quantifying the days. Explicit is what they need, 6 out of 7 days in bed etc. No room for wooliness (unlike my application).

I was so ill post-PIP assessment I didn't ask for a copy of the Assessor's report. I should have done as the summary letter they sent was pretty inaccurate and I was underscored across the mobility section.

I will do for the ESA, thanks. I also need to find out where to send my new PIP stuff too, you know when your condition deteriorates. Not sure I can face calling. My tachycardia was over 200 in the 40 min call to ESA last week. Or was it the week before?

www.benefitsandwork.co.uk/

Good information here with tips for completing PIP and ESA.

Yes ESA so different from PIp it's laughable ESA is all can you pick
Up empty box? can you touch your head? can you pick up coin off table? as if that's any indication of work. Must people on a high dependency unit could do that from their bed.

Then PIp asks about cooking but not how you manage to shop even on line then still need someone to help unpack put it away, then if you can cook yourself you may not then be able to wash up, tidy up, do bins and sort recycling. All normal
Stuff that comes with eating in everyday life.

I second work and benefits loads of helpful stuff.

I've just sorted out some piles of stuff from uni and.teaching. I'm feeling really sad that that's not the person I m. Anymore and really unsure about my future and direction.

I've stalled.

Just stumbled across and registered for Patient Access (online website to allow you to use your local GP services). I need more meds and I usually communicate with GP via e-mail or telephone. However, I can't order a repeat prescription with this service, until I go into the surgery in person and show ID Which was what I was trying to avoid.

Yeh, this ESA. Yes, I can move an empty box -at waist height. However if it was on the floor I wouldn't be able to, due to orthostatic intolerance and tachycardia. Both PIP & ESA ask questions that I feel sure are designed to catch me out. My head spins and then I give up

How long have you been ill worm? Or are you Wiggly?

Be careful, too much wiggly will deplete your limited energy reserves

Yes benefits and work are brilliant. I managed an hour on the pip before getting confused and putting it away for the day.

Have you had a look at pharmacy2u? You might just be able to register online without needing to go into the surgery - they also post your medication too. Ours uses a different system so I haven't used it, but worth investigation perhaps.

wiggly you're not alone and it's perfectly OK and natural to feel sad. And angry and frustrated. And all the other emotions that hit us when we're trying to live with this bastarding illness. I don't think any of us are able to think about the future - I try to avoid it if at all possible. My occupational health assessor said that the only thing predictable about this illness is its unpredictability. I found this to be of some comfort in a weird twisted way as it sums up the illness so well.

Have you got good real life support? How old are your dc? If you've got one under 5 you might be able to get some support from home-start?

Hang in there worm it's enough give anyone anxiety and depression just writing down the facts of past life.
I've just been down to Waitrose (I live in flats right next door) they managed upset me once again! Complaining this time sick of way I get treated there. Why can't people just treat you like an adult not some bloody alien!!

Just had ATOS letter saying they have asked for more information off someone I named In report, so GP or social worker maybe. Not that social workers stay longer than 6m and I sent her report anyway. But seeing it as a positive in that not summed me for FTF straight off.

I'd take that as a positive too Akire. Fingers crossed

Having real trouble with tachycardia. PIP & ESA pushed aside, again.

ME/CFS clinic is not able to refer to cardiologist, GP has never been keen. Have a rare F2F with GP next week to push for cardiologist referral. Will need lots of recovery time from leaving house

Am keenly re-reading your post Murmuration That's so interesting that you became breathless and diagnosed with asthma when it was your tachycardia. I found the undiagnosed tachycardia frankly quite terrifying. Although now I know what it is, it bothers me less iyswim.

I believe the tachycardia and orthostatic intolerance are related as I'm never tachycardic lying down. When I finally accepted 50 mg of sertraline (keen to avoid the 'depressed' label) I found that it was slightly easier to go from lying to sitting to standing and I was able to lie flat for the first time in 2 years (?) without feeling like my legs were higher than my head! I was less 'dizzy' too.

Now Sertraline is a SSRI and I hear that sometimes an SSRI is prescribed to POTS patients. Now, your Bupropion or Zyban is also an anti-depressant. I'm very interested to know how this all works

When do you go tachycardic, wood? For me it was definitely related to exertion, and particularly climbing stairs or lifting heavy objects.

Do push for a cardiologist referral. Have you mentioned POTS? I didn't know about POTS the first time I saw the specialists, and as far as I can tell when I told them my HR used to go over 200 they thought, "Well, that's impossible, so she's clearly exaggerating/lying and she must be taking the bupropion for depression". They referred to it as my 'antidepressant' in the letter to the GP, and then that made their weird statements make sense at my second visit, where they kept asking me if I thought increasing the bupropion would help my mood. And I kept saying my mood was fine, but would it help the fatigue? And that it seemed to be doing its job, because I wasn't going tachycardic. Although now I'm wondering perhaps increasing it would help. I've gotten a FitBit, and my average activity HR tends to be quite high -- I'll get 'fat burn' just sitting in a meeting and 'cardio' cooking dinner. But at the time it seemed weird to increase a medication to fix a non-existent mood problem, when the level I was currently taking it was fixing the problem it was meant to fix.

Anyway, it might be worth mentioning POTS so if the HCPs aren't clued in, they can look it up and see that there is in fact a condition where HR does regularly go over 200bpm and keep them from dismissing you outright.

That is so reassuring murmuration you are a star

Went attention-seeking over to Chat again with my HR, but really must make my posts smaller. I've been so ill and isolated with this that when my brain and typing fingers start to work collaboratively, I can't stop!

www.mumsnet.com/Talk/_chat/2873131-Any-Cardiologists-or-knowledgable-sympathetic-GPs-about-Scary-tachycardia-over-200-bpm?watched=1&msgid=67479050#67479050

Hope you're able to gather lots of evidence to get your gp to monitor your hr for a period of time. Frustrating when they just don't listen.

I finally finished my pip form - just waiting on dh to write a supporting statement. I finished it off yesterday and feel like I'm in a dream like bubble today - not quite connected to real life. Just as well I've not got plans :o

Had a phone call from my gp's about my last set of blood - unsurprisingly I'm low in vitamin D but my cholesterol is rising every time I'm tested. I'm putting this down to the complete pack of movement for the last 3 and a half years. I'm not sure what I can do about it - my diet is pretty good - no processed food, lots of veg/nuts/oats.

Wishing everyone a gentle Friday

I could have written your post Missis even down to waiting on your DH to write an impact statement. The thought of this seems to really stress DH, although I suspect he is overloaded with work anxiety too.

What ME/CFS scales does everyone refer to on their ESA/PIP? The David Bell 'Ability Scale':

drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

or the MEA Disability Rating Scale

www.meassociation.org.uk/2016/05/the-mea-disability-rating-scale-2016/

Very weak today. Hands/arms painful and wonder if typing aggravates it?

Oh and for finally getting that PIP out of the way! Now you can rest

Yes - my arms and hands are v weak today. Must be the typing. Much easier than writing though - I can only write a few words nowadays.

I suspect my dh is procrastinating as I don't think he really wants to think about the reality of how little I can do these days.

I use Dr Bell's scale and highlighted where I've been for the last 18 months. I put that I've been at 30% for the last 5 mths, but am at 20% on bad days and that these seem to be 1 better day (ie 30%) the the following 5 days at 20%. I've realised I've actually deteriated over the last year. Or perhaps I've stopped pushing myself so much.

Have just got back to bed with the electric blanket turned up and a cat snuggled up next to me and no plans to move for the new few hours :o

Well done on getting your Esa done - it is a renewal or an update?