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.

Sorry OP. CFS/ME is a very real condition and people can be very condescending.

I think I would treat it like a recruitment process for a small firm, which a lot of people tend to get wrong. Have a thorough discussion about exactly what needs doing and how long it takes, then you can advertise for a carer for x hours per week. Write a detailed job description. Be exact about what needs to be done - strictly no "make it your own position" or "being proactive". Remember that anything that's obvious or second nature to you is not at all obvious to other people. Too many employers expect people to be mind readers. In my opinion you can never give enough detail, and this is especially important when it's someone coming in to your home.

Thank you tectonic that is exactly the right sort of information I needed (I forgot to mention the debilitating brain fog).

You have zoomed in on one of my weaknesses too, I would have done exactly that.

You're right, it's important to get it right in the beginning...especially with limited energy here.

Basically this is the sort of thing you should avoid:

www.mumsnet.com/Talk/_chat/2851183-I-dislike-her-but-feel-its-unjustified

There's absolutely no shame in getting in a carer to help you. It may help to promote your long term recovery as you won't be spending energy worrying about things and how your dh is coping.

Eeeek tectonic that is a nightmare thread. We had considered clearing a space for a lodger (need the income) or a live-in carer. I think I would be happier to have a visiting fairy So I can lie in silence when I need to!

Woodyou,
My wife was very similar to you. Very capable, independent, full time HCP. Then diagnosed with a life shortening illness. Didn't want hospital bed at home, carers, visitors, anything. Two years on she's happy. I am the carer. We are mid fifties so have seriously downsized and live off her pension. Not the plan, but a hell of a lot better than we'd thought at diagnosis.
When I worked, I used to make a thermos jug of hot drink and leave it on her bedside table, her microwave porridge was in the microwave. Carer got her washed, dressed and I came home for lunch, so doing whatever then . I was lucky enough to start work early, meaning I was home early.
Hope you find the solution for you.

helpimitchy

It may help to promote your long term recovery as you won't be spending energy worrying about things and how your dh is coping

I totally agree. I think I just need many people to repeat this in as many different ways as possible

I think I do feel shame. I have been surrounded by medical people since the very beginning talking about my recovery and how I will get better. I understand the psychology of not painting a gloomy picture, but I have not met any of their milestones and seem to be slipping downwards, despite monumental efforts to recover.

Even the diagnosing Professor dismissed getting PIP and ill health retirement as it was unlikely & talked about getting back to work. I now have both

Lostpangolin your post is extremely helpful. Your wife is extremely lucky to have your support. Even if ill health retirement was not on your plan. It's a relief to hear from people out the other side who have survived.

My pension is really tiny sadly (had been cutting back working hours for what I now realise was ME/CFS) but probably enough for a carer a few hours a week. I think it's the fear of not having any income that is hindering the process too.

yes I have the porridge in an upstairs microwave and tea tray. Makes a huge difference! I am happy to stay in PJ's if I need to. It's DH's long working hours that are tough.

I'm not sure my DH could be a full time carer. He has adapted remarkably well to what is a shit life we didn't plan and has not really had much support from friends and family. I'm not sure I could ask him to give up his career too. How did you cope?

And your wife now? I can totally understand not wanting a carer. Does she have visitors now? Any resemblance to her old life or have you both adapted and embraced your new life?

for you both

Greg Crowhurst from Stonebird has written a guide for people caring for those with severe ME. stonebird.co.uk/Notes/index.html

Are there no benefits you can claim to help you with this situation?

Look at the women on here who have cleaners - tons and tons of them let someone into their home and pay them to clean up. Virtually all of them say how great it is to not have to do those jobs. Can't you think positively about a cleaner?

Thanks CFSKate your bookmarks are always helpful

Determined I am trying to think positively about everything. If I didn't I would sink. I accepted a cleaner when the house became really disgraceful & she made a massive difference. Now she has left for a big Housekeeping role & I have to start again.

I get basic PIP at £50 a week & that doesn't go far. Am-slowly- applying for higher rate. No ESA due to DH support.

I am still struggling to accept I need help from people I don't know. I have been accepted for Trauma therapy for childhood stuff, so
maybe it comes from there.

Anyone reading this, for gods sake TAKE OUT CRITICAL ILLNESS COVER INSURANCE!!!!!

Woodyou,
Work made continuing difficult, so I got a brilliant employment lawyer. We won. So I got sufficient to do me, I will go back to work once my wife dies, although not at the level I was. I don't care. The stress of trying to do both almost broke me, so leaving it behind and.focussing on my wife has been a quality of life boost, despite the financial downturn.
My wife is now much happier, better physically and mentally than initially. She now has visitors quite often, and loves it. We're happy,considering the complete change in life. No real semblance of our former life, but we're still going and will do whilst we can

Oh lovely, I understand exactly where you are. Sixteen months ago I was fit and healthy, walked my dogs 10 miles a day, looked after a huge 4 storey house and garden. I had horses, chickens, cats, ferrets, and a fish to look after. I was very isolated (bad depression and anxiety), but I kept myself busy, never sat down. That last summer I laid a patio all by myself.

Then I had my flu jab, reacted terribly to it, and my life changed forever.

You feel like every step is giving in, gettting the bloody blue badge for your car, admitting you can't cope with the house, and getting a cleaner, giving up on the garden, and having to get help with that too. Downsizing everything you do to the absolute minimum, the weeks of being glued to the sofa, with not even enough energy/concentration to read/knit.

Practically though, it will make your life so much easier, you'll expend less energy on fretting and trying to do stuff you really can't manage. It's hard, but it's worth it. I went through an agency, Debra is more than my 'cleaner', she's a ray of sunshine, happiness, and efficiency, who swoops into my house, makes it all lovely and shiny again, and goes that little bit extra. Her husband sorts my garden out, and any little things I can't manage. With then, I can manage again

lostpangolin I am so sad reading your post. Life is so very unfair isn't it? That must have been stressful for you both going through employment issues on top of such a diagnosis. It heartens me to hear your wife is so much happier now and has visitors. I find it difficult to deal with the sympathy and pity that can sometimes arrive in the house. Too much kindness makes me weepy.

I can imagine how it nearly broke you and I think it will help my DH to read this thread. It isn't possible to manage it all is it? Trying to retain bits of your old life is unrealistic I guess and that is what we are struggling to accept. We were newly married and had started such an exciting life together . It is taking us both a while to accept it and let go of our hopes & dreams..... which weren't on any grand scale at all!

I love your username btw. Had to look up pangolins. Thank you for posting. Give my very best wishes to your wife

Can you contact your local council for advice on how you can get assessed for care and what the situation is re paying for it?

I know if in Scotland it'd be "Self Directed Support" if elsewhere in UK might be called something different, seem to recall possibly Direct Payments?

This is all very helpful thank you. I have popped over to the Spoony support thread with a brew & cake to see if there is anymore wisdom I can find, to push me along.

If only my brain & body was working properly, I could sort it all out in a flash

You poor thing. I can empathise, it's 7 years on for me and I still can't accept that this isn't a temporary thing that I'll get over one day.
It's such an awful illness.

Have you approached the council about getting a starlift, OP?

FoofFighter [giggle] Great name.

I had never heard of that, thank you. It is Direct Payments in England, just seen it on Carers UK website - that I had also never heard of. Looks like we are crossing into helpful territory now, rather than denial . I guess I still hadn't seen me as needing a carer.

www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments#sec0

Glad it's been of use to you and that my name made you giggle :D

I'm currently fighting myself to get help with what I suspect is Fibro, complicated by b12 deficiency which the GP's seem to not want to do anything about :(

TheNiffler had to look up Niffler's too My memory is terrible.

Poor you! Mine started with the flu virus. Did your flu vaccine trigger ME/CFS or something else? I've been advised to get a regular flu jab but to be honest I'm wary it will make me worse. I rarely go out anyway, so hoping I am at low risk of contracting flu.

It's such a shock isn't it to be so strong, healthy, active & CAPABLE to this 'existing' life . What happened to all your animals? I have always been planning to get a dog but it would be so unfair to have one when I can't even look after myself. Does Debra & husband help with them too?

I definitely need my own ray of sunshine to arrive and pull everything back together. Have contacted an agency but it's pricier. Possibly meeting a non-agency person in the next week, but it's all so exhausting.

You're so right about each step feeling like giving in . I think I'm fighting each stage too which doesn't help.

All the feckin' ME/CFS 'evidence' about staying positive and keeping active results in recovery is not helpful either after a year, I am now moving from the Graded Exercise at the ME/CFS Clinic to home visits . And I had a CBT therapist trying to convince me it was psychological and I just needed to get my confidence back and go out....

[not an icon available for how I feel about that]

Ashes SEVEN YEARS!!! You poor love. I'm not quite there yet. My goodness you must be exhausted. How DO you juggle the 'this is temporary, I'm not giving in to this' with 'I must accept my limitations and put in a care package?'

Have you got a stairlift? I only have 1 flight of stairs and when it's bad I try and keep to one floor. I am quaking at the thought of TheNiffler in a 4 storey house

I understand - I've had me/cfs for the last 4 years. I have moderate cfs (40%) but slip to 20% on the scale when I'm having a relapse. I completely get the depression that lifts as soon as your physical condition improves even by a hairs breadth as you cling to the hope that perhaps this time I might start to get better. Only for a relapse to happen a week later.

I have found that this time of year is horrendous for me and have mentally prepared each year for jan - March to be pretty much housebound with the majority of my time spent in bed. Anything I can do beyond surviving is a bonus.

Have you contacted adult social services for an assessment. They may be able to help with adaptations.

You need a girl Friday/housekeeper type person - someone that can be flexible with what you need on every different day.

I've been having interpersonal therapy to help me come to terms with living with the illness and the fact that my old life is no more, despite my hopes, dreams and aspirations not changing. I'm getting there but I don't think I'll ever fully accept it but I'm no longer fighting it.

niffler I got ill after a flu jab too. I often wonder if that was the trigger as I got a virus about 10 days after the jab.

to everyone also suffering with this bastarding illness.

Foof so sorry to hear that. See, fighting & Fibromalgia (& ME/CFS) should not be in the same room together! It's hard enough as it is. I have read so much about not lying down and accepting it all, yet 'fighting' is so draining.

I've heard great things about a health turnaround by treating B12. My blood results show I'm within the limit for B12 and my GP would NOT give me injections 'just in case'. She said I could take OTC B12 tablets if I really wanted. I have bought and take a 5000 (?) sub-lingual pastel each day but it does not seem to have helped at all.

So keep going! (when I can, I'll hook out my B12 results)