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.

I am liking the carer suggestions Artandco I only need one part-time.
Akire If you can spare the spoons, yes please to a Top Tips Carer List. I'm hoping there are lurkers others here who will benefit too.

Keep chatting about the flu too, that's interesting.

Off to touch water now. Not a euphemism....

Afternoon wood

I think a sign in the do it like that would be perfect It would make me smile and I would know what I was in for ! I do reccomend having someone with you when you interview , I know it's a grim process but honestly most people are good people.

You sound so much brighter today which has got to be a good thing .

My phone hates me . A sign on the door that should say .

I have CFS/ME, a dodgy thyroid and endometriosis. Lumped together these conditions have ruined my life.

I run at about 40%, moderate ME, I've given up my social life, I can't work. My daughter is severely disabled and will require lifelong care, I'm just about keeping my head above water caring for her but the house has gone to pot.

Funnily enough, I think it was the 2013 flu jab that triggered mine too, it's such a 'coincidence' that so many on this thread have said similar. I lived a very stressful life, always on the go, constant adrenaline from DD's precarious health, always busy, a true perfectionist etc. I had a weak immune system and a couple of surgeries to treat the endo. Steadily declined until I eventually 'broke'. Have been like this for two years now.

It's frustrating. Mostly because people don't understand. I struggle to ask for help. If it wasn't for respite and evening carer help for my DD, I would have had to consider residential care for her (which would finish me off I think)

Get some help. My DD's Carers have become people I look forward to seeing. It was tough watching someone else do my job but I don't know where I'd be without them now.

I'm considering a cleaner too, it's finances that hold me back. I haven't applied for PIP or anything, I don't know if I'd qualify, I wouldn't know where to start.

It's very isolating OP, at 33 I feel I'm decades too young to feel this terrible. It's a horrible, insidious, life limiting illness but hang on to the good moments for dear life. MN is a lifeline

By 'life limiting' I mean activity/fun/social/domestically limiting. Not limiting lifespan.

I'm wondering if you've got a local cafe nearby that would be able to cook up extra portions of food for you?

If you knew their menu they could box some off on their way home each day or your dh could collect.

I know it's odd but somewhere like your local age concern could have a list of 'approved' carers/gardeners etc.

What about advertising in the local section of mumsnet? It'd perfectly suit someone looking for a few hours once their dc's are at school.

Looking for a carer:
I've always found gumtree to be a great place to advertise. It's around £38 for advert but you do get lots of responses. My local paper wanted £250 and you can't advertise in job centre easily any more. Though you could try ad in window I've just never done it.

Be really clear what you want, days and times. At first I was over flexible to people and would arrange stuff to suit them. Now I'm much better at putting my needs first.

Ditto be clear sort of person you want. I want a non- smoker so I always put this (yes I can tell A mile
Off if you are lying) it can seem really picky at first to put a list of requests but it pays off in long run.

I always say attach C V but do tell you something about your self. If they don't do this- they go in the
Bin too. C V don't really tell you a huge amount Everyone is "able to work as part of a team" or any number of ramblings that people put that don't mean much. It's the few lines about them that makes difference in me asking them for
Interview. If they can't read the advert and follow this basic
Instructions I don't hold much hope.

always have an email to reply in advert this helps you wade through the crap. I may get say 40 replies to a job advent but 25-30 of these will be those on JSA who need to apply for X number of jobs to qualify for benefit. They probable live 2h away on public transport and have none of the experience you want. It's easier to just delete these on email thanhave people ringing you up.

Always invite 4-5 people for interview you may get 2-3 actual
Show up.

Now If I have vacancy I say it's for 6months to start with with possibility of extending. Mainly because had plenty Of bad experiences, some people start well then quickly go down hill. Then you are stuck with someone you can't just sack as they are not bad enough for gross
Misconduct and the like. But make
Your day a drag and bring no joy. If you have a time Limit you can then get rid of them at a set time.

I use a payroll company again be clear in advert that is by cash in hand. You will have loss of people offering work for less for cash or off books or not legal. (I live in london probable more of a problem here) but as an employer you can be prosecuted for not employing a person with right to work in U.K. So I always ask for copy of passport for ID before start. Not that I'd know a
Fake one but at least you have something on record that you did your best.

Always take up references.

Keep careful paperwork when people start and leave and holidays and sick. You think you will remember but you want. Then in 2y time Someone will ask For a reference and you can barely remember them Never mind how many days sick They took.

Don't be afraid to use agency's either. I use them now for a few calls a Week around my own carers plus back up for Holidays and sick pay.
Thy have the adventage that if you don't get along with a carer you can ask for Them. Or to come Back without any drama. It's also good practise to Get use to asking people
To do thins for you. It's a skill to get strangers to do x y z in best way possible and does Make You more assertive. Ideally you want people who can take instruction and do
It your way. That applies both agency and Own carers. No I don't care this is how you do it at Home please do it This Way. I've put up with crap over the years I'm much better now!

Down side with agency is That high turn over of Staff and time
To main aboyt pay and Conditions. But there is no papaerwork and normal you can have few hours a week and Stop start when you want.

I'm on my 5th agency ! Mostly because communication can
Be rubbish or they don't give carers time to travel. So person 9-10 you 10-11 with 2 bus rides between you. But I'm lucky as Loads agencies around me so can be picky. Again don't settle If you are not happy. You are paying for a service.

Hope that helps someone!

Mama I have no idea how you cope, looking after your daughter with those health issues And I know what you mean about letting the house go. Some people do not understand you don't have any spare capacity to do even the simple things

Interesting you said about running on adrenaline & lots of stress. Me too. I keep seeing articles about stress depressing our immune system & making us vulnerable. I was also in very early stages of a pregnancy which makes you vulnerable. The MC's I had were very traumatic but would it have been worse for me if I had had children to care for too? I would have sunk I think.

Now, we're old before our time My elderly Nan is FAR more capable than me! She can't understand this at all

Akire!!!! Your mammoth post Do you have any spoons left?

That's fantastic information though & includes so much I hadn't thought of. Perhaps I should get this moved out of chat to preserve the info. What does everyone think?

Thank you Artandco & Missis for your ideas about food too. Simple things I hadn't even thought of. A cafe nearby? Sadly, no. A school..... but I'm not sure things have got so bad that I need school dinners (no offence to any school chefs who work hard to provide quite amazing food in some!)

Saving spoons now. Happy Thursday All

Wood It's half term here, today has been impossibly tough. DD signed she wanted to go out but I just couldn't muster the energy. I'll try again tomorrow the guilt can be overwhelming sometimes, during moments of hopeless pity I feel like a terrible Mother, she deserves better.. then I remember what a great job I've done over the past decade and just pray I can continue to care for her.
Every relapse I panic that I'm getting worse, the key is to run with it and know it'll pass. Winter is so tough.
I look fine (with make up) so people assume I'm fine. There was one occasion I was so fatigued I was slurring my words, a shop worker thought I was drunk. That was a bad day.

I struggle. The house is currently trashed, this gets me down too, I used to have it all under control, but there's nothing left in the tank and I still need to do bedtime and make some dinner. DD is tube fed so at least her needs are met. I have to stay up until midnight to get enough calories into her so despite ME, I am still sleep deprived. I don't think I'll ever recover because of this but I remain hopeful.

I've done a lot of research and I'm convinced it's caused by immune dysfunction. My thyroid condition is autoimmune, I believe something, possibly the flu vaccine or surgery, triggered an immune response and sent it haywire. I'm sensitive to a lot of foods and smells, I eat a very controlled diet. I can't tolerate any alcohol. I can no longer eat chocolate or dairy or bread.. there's not much fun in ME world!

Also, food wise. As much as I like homemade Yadda yadda, you can buy great pre done stuff now. It costs a bit more but the fresh soups, pre done quiches, 'cook' ready meals etc all worth using

Oh, wow, those 'cook' meals look very interesting! Although expensive. And I'm afraid that every one I've looked at so far has something DH is allergic or sensitive to (this includes a broad range of typical ingredients/spices, so not surprising). But I wonder if I keep looking I could find something that he could eat and keep in the freezer for emergencies (they look frozen?). Do they ever have sales?

Hmm yes allergies and ready meals aren't great. I think prices stay the same at 'cook' TBH. They were good both times we bought when we had new babies

Picard frozen range ocado stocks now. Supposed to be very good for frozen food and reasonable.

Another option is maybe a type of au pair? They usually do basic childcare and odd basic house for £100 a week and accomadation, 20hrs a week. They live in though. And most here to learn language also or study. But you might find someone who would be happy to just do basic cooking and laundry etc in exchange.

Or maybe a student if you live near a uni? They get free accomadation and 'pocket money' in exchange for a few hours help. If it's not actual personal care you need but just help with food prep, chores, odd errands etc that could suit someone, especially if they can work around uni time

Wood pleased your getting some support here. I do get wanting to keeping your independence.

I think Art's idea is really good. I know plenty of colleagues who would jump at a position like that.

Resting & Reading here Think the last two days are catching up with me.

So many good ideas keep arriving & when I get a PA he/she will be able to type up my responses to you

COOK looks tasty. Rather pricey tho. How lovely they offer new parents discounts for SIX MONTHS! I might have been able to afford them if I had a baby instead of being a recurrent miscarrier with ME

Rest up - your brain is probably overflowing with information - lots of good ideas on here.

In the old days we probably would've been sent off to the seaside to recuperate.

Another suggestion could be contacting the local women's institute. They may have members who'd be interested in helping you.

Sorry for your miscarriages - something else that me has stolen from you

thank you Missis

Morning. A little update.

Have read through & discussed all these suggestions with DH. Have put out 2 small free ads about cooking and cleaning and have a -recommended-cleaner coming to see us later. I hope she can start soon!

Lots of -mixed- applicants for the cooking bit. Language barriers have been a bit of an issue so far but hopefully there is the right person out there for us.

Akire & Artandco I have borrowed heavily from your advice and planned out interviews and questions already to limit energy at the interview. Applicants will get these Q's in advance and this might weed out the 'time-wasters'.

Am loving the sound of the WI Missis. I think I could do with some mothering from a warm, bustling efficient bod, who could sweep in with hot tasty dishes....and flowers from her garden

Also daydreaming about gentle seaside recuperation [sigh]

Thank you to you all for your contributions. The resulting exhaustion from thinking & typing have been well worth the practical, emotional & moral support I have received. to Missis & Lostpangolin for your PM's & keeping me going!

to Mumsnet! I'm not sure I would have survived the isolation had it not been for the internet.

Sounds like you've been busy putting plans in motion - great news!

My only suggestion would be about not giving questions in advance - only because it gives people time to swot up and you may get someone who wouldn't have necessarily made it through otherwise.
I do think though, to a certain extent, personality will lead you.

Have you put in the ad that you have me? I'd be asking a question about what their understanding of the illness is - if someone has taken the time to read up on it and have some understanding of how it impacts on you (and subsequently, how it would impact on their role) then that would give a great insight into their attitude and approach.

Enjoy the the weekend and fingers crossed your potential cleaner makes the grade :)

Sounds like you are making great strides . You have done the hardest bit already , fingers crossed you find a good fit quickly .

Sepsis and CFS. Chris Armstrong an Australian researcher posted this about his CFS research,

link "starvation and sepsis are two acute disorders that show the same metabolic anomalies we are observing in the blood metabolome and this work actually adds to them. Sepsis and starvation may provide a very good model to shed light on this illness because they are well studied in clinical work. What is found in starvation for example is a reduction of amino acids and lipids in the blood but also with an increase in glucose (hyperglycemia). The logic is that the body maintains glucose high in the blood so it can be readily used by the brain and muscles to find food, the same occurs in sepsis except the high glucose is used to give immune cells the ability to proliferate to fight infection."

If language is an issue for cooking applicates. If they speak basic English, see if they can follow a simple recipe. Ie don't just say can you make soup, get them in for a trial if you like them and hand them a few printed recipes 'BBC good food' online usually good. Most can then just use google translate as they work to translate anything. If they stay, you can build up a folder of recipes so over time you have say 10 soups, 10 casseroles, 10 chicken dishes etc.. and they can just work from those.

Oh well done happy sounds good though I keep some questions for interviews too. Don't dismiss language importance I live in London so tends to be more problem here. I also have no speech so need people to read and understand a high level. People often get help to reply on line then in the meeting they struggle.

Once sent carer shopping for icecream. Came back total different flavour (was hagn daz) when asked her why she said they all looked the same. That's why they have words
And pictures on!

What I'm saying is it's fine to want a higher standard of English, don't go with something you are not happy with. I've also had problems with people spraying cleaning stuff on tiles or on woodwork when not suitable because they can't read labels so just think it's for all cleaning.

Anyone see this about a 'Breakthrough' in ME Research?

www.meaction.net/2017/02/22/stanford-team-announces-breakthrough-in-mecfs-research/?utm_source=%23MEAction+Newsletter&utm_campaign=0aab9386ae-EMAIL_CAMPAIGN_2017_02_22&utm_medium=email&utm_term=0_c4e623c366-0aab9386ae-351220433&mc_cid=0aab9386ae&mc_eid=de598ed0a9

Did anyone watch the video too and think Ron looked pretty tired? He was talking very slowly too and I hope his research team work faster than he talks!

Maybe he was speaking slowly for the purpose of ME patients? I do hope he doesn't crash with the pressure of his seriously ill son. You wouldn't ever stop if you thought you might find the key which would release your child from his hellish confinement of very severe ME.

Back later. Having skype with hospital now

Woah, that is nifty! Didn't watch the video, but read the article. An actual diagnostic test would be amazing.

You skype with the hospital? That's pretty nifty too...