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.

Hospital just mentioned this 'breakthrough' too. Now I'm confused........

statements.qld.gov.au/Statement/2017/2/21/gold-coast-researchers-make-chronic-fatigue-breakthrough

Though to be honest everything confuses me.

I have to save all of CFSKate's links she posts, for a day when my brain starts working again and I can understand them sufficiently.

Back later. Just off to recover.

I wish Storm Doris would piss off though, the noise from the trees outside is horrendous and my house has just started playing the oboe

www.huffingtonpost.com.au/2017/02/21/queensland-scientists-make-chronic-fatigue-syndrome-research-bre/

Same 'breakthough' different link

The scientists from both those breakthrough links will be at the London conference in June.
Ron Davis from Stanford in USA and Sonya Marshall Gradisnik from Griffith Uni in Oz. The Norwegians Fluge and Mella doing the Rituxan trial will also be there and
Also Warren Tate who has an affected daughter.

Mmm, interesting. Anyone going to that conference? Some big names there. It would be great to get them all in a lab together with unlimited funding, resources and ME patient volunteers. And not let them out until they find a cure! Not that I'm impatient or anything.......

Does anyone wonder if they are amongst the 25% of 'ME/CFS' patients who have been estimated to be wrongly diagnosed and actually have something completely different? Once you have your bucket diagnosis of ME/CFS, how would you ever find out?

Coming up again I think. Yay! Looking back through this thread there are some great ideas. I hadn't heard of Picard and someone else mentioned Gousto too (for their discounted opening offer). Both fall back options definitely. As are Au-Pairs and students (although would definitely prefer live-out as difficult to relax and sleep when others are in the house).

This thread has really helped me to begin to change my mindset, thanks everyone. I know that there are people much worse off than I and that I am severely ill compared to others. What is comes down to though is we are not surviving alone and that has to change.

I have had lots of online applicants for cleaning and cooking and it has been easy to weed them out through sending some questions in advance and information about ME. There is a possible one who already cares for someone else with ME and has to support her dietary needs too. She also lives nearby.

In the meantime I have had a recommendation for a cleaner. Had my questions and DH to help and the 'interview' went well. She's been here for 3 hours and cleaned the worst of it, bless her. Her English is variable but she is pleasant and efficient. She's also offered to come back on Monday to do some cooking. I am quite excited!

You were right. It's about clicking with the right person and personality. And trust. She goes to Church. On a Saturday night (non-English service). Anyone who goes to church on a Saturday night has got to be good soul right?!!

Now we have God on our side, I feel things are looking up

Thanks Artandco and Akire for the language tips. It is important as I have trouble communicating in my own language when ill without translation issues. I use the BBC Good food myself and it's fab that t'internet translates everything, so will give that a go.

Akire I'm gutted for you that you ended up with the wrong ice cream flavour . It must be incredibly frustrating not to have speech & have to rely on carers. I only struggle with my verbal communication when I'm very severely at the bottom and I hate it. I watched that BBC3 documentary 'Locked In' recently. How scary. I'm sure you've seen it. Only 15 mins long, so just my length of attention span. On a good day

www.bbc.co.uk/programmes/p044bd7q

I'm glad you started to get some
Help, makes things feel so much calmer with the right person. I'm lucky with latest agency in that everyone send has high level of engilish before with other agencies been hit n miss. I am well familiar with that nodding head knowing they don't have a clue what I am talking about. Once had 10min conversation trying explain what a box was or googling pictures of a parsnip because they don't know names. Though calling them
White Carrots often works!

Just wanted to send you OP
A couple of my friends have similar conditions and it's horrible, very unfair.

Lots of lovely positive action to report from you wood.

Sounds like there's at least one potential from your shortlist of cooks too. It would be lovely to have someone who had some insight into me.

I was just thinking - when you get your cook perhaps ask for them to do a monthly meal plan. This will help when it comes to ordering a food shop. Especially if they can batch cook and then you've got a decent amount of meals backed up in the freezer.

I've had a really rough week - made it out of bed on Wednesday afternoon as a friend was popping by but by the evening the pem kicked in and back in bed every since.

But the sun is shining and in keeping with letting people in I'm going to call my dad today and ask if he'll come and take a massive pile of ironing away with him. He's one of my practical 'doors' to knock on. I'm getting over the barrier of asking for help slowly but surely :o

And yes - lots of exciting news in the research field. We just need a generous philanthropist to step in :o

If you can do nothing else, if you shop at amazon start here and click the link to amazon.

Was doing so well. 40 mins lying flat in bed on phone to ESA & HR was above 160! Shattered. Sunny. Want to be outdoors. Humph

wood. How are you doing now?

I think I'm among that 25% that doesn't really have CFS/ME. That why I said I have something :) I definitely have a dysautonomia - I take medication for it, and cannot operate without the medication. And yet, somehow, the specialists my GP referred to me seemed to mostly ignore this fact and as far as I can tell straight-out disbelieved me when I told them why I was taking it. Thus they came out with CFS/ME as the only possibility because there was "nothing physically wrong with me". And I'm coming to conclude more and more that I probably have only a dysautonomia (be it POTS or some other subtype) and not CFS/ME. Exercise actually makes me feel good, which is completely not the case for DH with classic CFS/ME. I can't tell if I get proper PEM or not - problem is I'm operating so close to the edge of my energy envelope I'm regularly crashing, so can't really connect it with some particular exertion. I'm also applying a lot of POTS techniques which seem to be really helping me.

Hey murmuration thanks for asking. Coming back up again? Maybe

That's interesting what you say about having something. My main symptoms seem to be around dysautonomia too. How did you get diagnosed and what medication do you take, if you don't mind me asking.

I have broached this subject many times but have never had an official assessment of the tachycardia etc. My GP says they don't do heart traces there (they do) and "well, we already know that you get tachycardic". My ME/CFS clinic has Skype yes, but broken HR monitors and did not suggest any referral. I now have my own monitor and after a year at the clinic with no improvement, I am now going to be referred back to the consultant, poss Cardiology too and the Community Fatigue Team for home visits. I wish I'd pushed for it sooner but I did not have the fight for it.

Does anyone feel like no-one takes you seriously and you are just over-anxious? . Yes, I am anxious. Now. I have never been so sick in my life and you are all repeatedly telling me that my test results are all fine. No-one actually explained how scary it is to be repeatedly tachycardic.

Oh and I asked about being referred onto Syncope & Falls people Ella but it seems that wouldn't happen because I'm not over 65.

NotCarylChurchill I am so sorry to hear that. I have been so disappointed with the lack of medical support with this, but at least I have something. It must be so tough for you. Do you have family/friends support?

I have monthly appointments (now over Skype since the winter) and can e-mail my physio. She is lovely. But. She is a physio. Her job is to get me moving. Which I can't. I've tried. But I get so far with the GET and I slide back with the flu symptoms triggered. I would love to know what she really thinks about the PACE trial. Her colleagues were big bods in the study and implementation of it. She wasn't permitted to see any of their data either.

And for Missis. I am so sorry to hear that you keep crashing. How frustrating. I'm going through a phase of no visitors at the moment because I can't cope with the relapses afterwards. Very isolating.

Have some though for asking for help from your Dad! It really helps to have people to call on and when I read about others doing it, it helps me to take that first step too. I did ask a friend for a favour last week and she admits that she also finds it really difficult to ask for help herself.

Where can I move this thread to? I think it would be useful to keep up, particularly the carer information and The Bastard Flu discussions

murmuration I forgot. Yes, I feel GOOD when exercising/active! I have repeatedly dragged myself out of bed and once I get going I feel great!!! I read so much that convinced me that I just had to push on through and keep going, blocking out the horrid vertigo. This was backed up by all the NHS advice too

However, the crashes/relapses were (are!) awful. I think I was achieving all these things on adrenaline and now the system is 'broken'. I don't seem to be able to push on through like I used to.

I confess I am also at the edge of my energy envelope most days (moving to loo or re-heating food) so have found it difficult to link it accurately. I need an Illness Management Consultant to oversee the whole goddamn mess

www.hfme.org/adrenalinesurgetips.htm

ME subgroups, some stuff about orthostatic intolerance

If you have ME, now is not the time to give up hope

WoodYouBeHappy I'm not sure if the hummingbird website will stay up, as the website owner died last year.

I had forgotten about Jodi @ Hummingbird. Thanks CFSKate. Just read about it all over again. So sad. She was such an inspiration.

Another person who was well one day & neurologically Ill the next. For years. And deteriorated after ill-advised medical advice to exercise & keep active.

I am not improving. I seem to be going backwards. I am fighting it. I am getting tired of the 'pushing uphill' battle every day.

I have to reapply for PIP & employ more help each week. Otherwise I will just degenerate further.

I will also have to ignore the vast amount of articles & advice from the 'Mind over Matter' cronies & their 'push on through' mindset. Done that for the last 3 years & it's only pushed me closer to my bed

Please please please don't push yourself.

I was supposed to do get but just nodded my head and pretended to go along with it so I was still in the system and looking as if I was engaging.