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Working full time and caring for fiance with M.E/CFS - Carers UK Forum

Working full time and caring for fiance with M.E/CFS

A place for those 18-35 to chat about all things caring.
Hello

I'm 25 years old, work full time in an exciting but demanding job and I've been caring for my fiance who has M.E for three years.

We have been together for five years, met at University, where he was perfectly healthy and ready for life. One of the things I always admired about him was his passion and determination to get the most out of everything he did. He is intelligent and motivated, and I fully believed he would have a hugely successful career. He loved sports, travelling, cooking etc .. had lots of hobbies and was always up to do things together. It was very easy to fall for him, as he is also very funny, kind and compassionate, and a great listener.

Despite having glandular fever at school, and a short bout of sickness in our third year which we never really got to the bottom of and was diagnosed as a 'dairy intolerance' there wasn't much to suggest he wouldn't have the life he expected.

When we left University in 2015 he was ready to start his career, we both were... we traveled around Brazil for the summer and then started jobs (although sadly couldn't live together immediately due to location). We were naturally both tired to start with, but I got better with time whilst he got worse. I couldn't understand it at all, he would come home from work and just sleep. I thought he was being lazy (ashamed to say this now) and would criticize him for it.

After a while we decided to go to the doctors. They did every test I could imagine, he must have had more blood tests in six months than I'll likely have in a life time. Nothing - everything was fine. Nothing wrong with him. Despite all the while he could barely stay awake, would have awful brain fog, terrible muscle pain and couldn't get off the toilet.

Long story short a year later they gave up and diagnosed M.E. That was Aug 2016. He was off work for a year. Then he started to get better. He worked his way back up to full time, we were so excited. But then it hit again - he'd done the worse possible thing for M/E and overworked. Another year set back. He worked his way back again, but it became clear to us that he wouldn't be able to work. He left his job in May.

I support him as much as I can. I do all of the house hold chores alone, plus also working a full time job which often leads me to do 10 hour working days. It's a lot. I have a lot of support from his mum which I am so grateful for but my own parents are very unsupportive and spend most of their time suggesting I 'leave' him because my life would be easier without him. I love him.... you don't leave someone you love for being sick. I wish they understood that.

The problem is ... and this leads me to the end of this very long post (sorry!) is that I don't feel like anyone in my life understands that sometimes being a carer and working is really really tough. Sometimes I want to vent about it. That doesn't actually mean I am unhappy with my fiance. I don't want to leave him, and I wish the answer I got back wasn't "well leave then" because I don't feel like I can vent without it reflecting badly on him.

Does anyone feel the same? I would love to have someone to talk to who understands that just because i'm having a bad day doesn't mean he's 'using' me! It just means i'm having a bad day!

Thanks for reading - sorry for the long long post!
Has he ever been seen by an expert in tropical diseases? I'm wondering if he developed something whilst you were in South America that isn't recognised here?
Hi Rachel
I only know of ME 3rd hand but I understand it may be long term but not neccessarily lifelong in that most people do recover over time so there is hope.
I can think of anyone on here currently with it so young, but I may be wrong.
Have you been in contact with the ME association?
https://www.meassociation.org.uk they have local support groups who may have more specialised help and support for you and him.

Does he do what he can to overcome his illness, or is he sinking into depression and self pity? It's important he takes responsibilty for his own health within his physical limits.

We do have other young carers on here and I'm sure they will be along soon to say Hi

Meanwhile yes we offer A very safe place to vent. All carers feel frustrated, guilty, isolated, angry, sad and a thousand other emotions.

Advice to all carers applies to you too, to look after yourself physically and emotionally. That means eating healthily, exercise and fresh air and some regular respite time.

What are you biggest problems and your biggest feelings?

Kr
MrsA
Taking up BB's point, it might be worth checking with the London School of Tropical Hygiene to see if being seen by a doctor there might give 'clues'.

A friend of mine's father was in hospital a while back with something that NO ONE seemed to be able to diagnose. It even became a 'challenge' to the doctors, and the pathologists. Finally it was a visiting 'foreign doctor' who suggested he had, of all things, a fungal infection of the brain ......this was checked for and 'bingo' that was it! The pathologist even came to the ward to look at him after he'd confirmed the diagnosis, just to see him 'in the flesh', he was so astonished. (He'd 'caught' the fungus as he was a keen gardener, 'well into' his composting!)

I was wondering, given that you say your partner 'relapsed' whether, IF IF IF it is a tropical disease of any kind, whther it might indicate it is a protozoan infection, not a bacterial/viral one. Protozoan infections - like malaria, for example - are 'nasty' in that they can 'hibernate' in various organs, and then 'burst out' again and flood the blood stream, and give you another outbreak after a long time of 'quiescence'.

If however, it IS in fact ME, then it's yet another (sigh) of these 'intractable' auto-immune diseases, which are so wretched. Would the best 'self-help' at the moment be to do everything he can to boost his immune system to help his resistence???
bowlingbun wrote:
Tue Nov 20, 2018 9:53 pm
Has he ever been seen by an expert in tropical diseases? I'm wondering if he developed something whilst you were in South America that isn't recognised here?
Hi bowlingbun.
Thanks for replying :)
Yes we did try that route. I thought it could be something he contracted in Brazil potentially, but they never found anything. We went to all the same places, ate all the same food, and didn't really venture into the Amazon or anywhere off the normal tourist cities. With the exception of Iguazu Falls, which we went to for only one day, we were in cities most of the time. It seemed strange that we could have come away with me totally healthy, and him contracting something but I agree not impossible. I hoped it could be something like that but there was no luck with testing. Maybe it's worth another round though just to check!
MrsAverage wrote:
Tue Nov 20, 2018 10:27 pm
Hi Rachel
I only know of ME 3rd hand but I understand it may be long term but not neccessarily lifelong in that most people do recover over time so there is hope.
I can think of anyone on here currently with it so young, but I may be wrong.
Have you been in contact with the ME association?
https://www.meassociation.org.uk they have local support groups who may have more specialised help and support for you and him.

Does he do what he can to overcome his illness, or is he sinking into depression and self pity? It's important he takes responsibilty for his own health within his physical limits.

We do have other young carers on here and I'm sure they will be along soon to say Hi

Meanwhile yes we offer A very safe place to vent. All carers feel frustrated, guilty, isolated, angry, sad and a thousand other emotions.

Advice to all carers applies to you too, to look after yourself physically and emotionally. That means eating healthily, exercise and fresh air and some regular respite time.

What are you biggest problems and your biggest feelings?

Kr
MrsA
Hi MrsA,
Thanks for replying :)
We have got in touch with Action For M/E really recently. I didn't know much of them until lately. He has always been a bit funny about seeking help... I went into power research mode a few years ago and tried to suggest we join some local support groups but he said he didn't want to go because he didn't want to see people who might be worse than him, he said it made him feel depressed. I guess I never went because a part of me felt like I didn't really 'deserve' to go to a support group when I'm not the one with the actual condition. I will have a look and see if they do things for carers though, maybe it's the right time to try it now. I think he is more open to it now he's had it for so long.
It's not necessarily life long, and some people do recover (keep your fingers crossed). From what I understand not many will recover to full health, but at least to a level above the peak of their illness so we have hope for that. He is very good at trying to keep positive, within his limitations. I admire his ability to look forward, he has found ways he can enjoy the competitive side of his personality through gaming which doesn't expend his energy like other sports so he is trying.
I try really hard to look after myself as well, I know it's important. Eating well is actually quite easy because it's a very important part of his recovery. He's on the auto immune protocol diet, which means that all our food has to be fresh, organic, home prepped and healthy. I am lucky in a way because by nature of the fact he is eating that so am I. Ironically i'm probably in the best physical health of my life because, as you suggest, exercising is one of the ways I can destress so i try to do it reasonably often.

My biggest problems and feelings... big questions! :)
To be honest the perception of others is what I really struggle with. It's the constant feeling of judgement because people don't understand M.E... the idea that he's not 'actually sick' and that he's just 'lazy' which just simply isn't true. We are planning our wedding and my parents still seem to make tiny references to the fact that I could just call it off on a regular basis, that I find really hard.
Also I suppose... and I feel bad for saying this... the slight feeling of inequity. That I work to earn for us to live, but also support him with everything at home. I guess I always thought i'd have a partner who was contributing equally to our lives. It worries me for when we want kids, which is something I've always wanted. It's hard to come to terms with the fact that accepting I love him means accepting a life which is really quite challenging. Every time I weigh it out he comes out on top though.. it's just sad that it has to be that way I guess.

Thanks for your kind words
Rachel
jenny lucas wrote:
Tue Nov 20, 2018 10:34 pm
Taking up BB's point, it might be worth checking with the London School of Tropical Hygiene to see if being seen by a doctor there might give 'clues'.

A friend of mine's father was in hospital a while back with something that NO ONE seemed to be able to diagnose. It even became a 'challenge' to the doctors, and the pathologists. Finally it was a visiting 'foreign doctor' who suggested he had, of all things, a fungal infection of the brain ......this was checked for and 'bingo' that was it! The pathologist even came to the ward to look at him after he'd confirmed the diagnosis, just to see him 'in the flesh', he was so astonished. (He'd 'caught' the fungus as he was a keen gardener, 'well into' his composting!)

I was wondering, given that you say your partner 'relapsed' whether, IF IF IF it is a tropical disease of any kind, whther it might indicate it is a protozoan infection, not a bacterial/viral one. Protozoan infections - like malaria, for example - are 'nasty' in that they can 'hibernate' in various organs, and then 'burst out' again and flood the blood stream, and give you another outbreak after a long time of 'quiescence'.

If however, it IS in fact ME, then it's yet another (sigh) of these 'intractable' auto-immune diseases, which are so wretched. Would the best 'self-help' at the moment be to do everything he can to boost his immune system to help his resistence???
Wow what an interesting story! Thanks for sharing. I will suggest it to him, maybe it's time to revisit that one. We only ever investigated it with UK doctors, so maybe someone else would see something we wouldn't.
We try to do everything we can to boost his immune system. He's on a special diet called the auto-immune protocol diet, which has been show by some auto immune patients to really help. It has absolutely done wonders for him, but has never been able to improve his health to that of a 'normal' person. We also try to ensure we go abroad for at least a week in the cold winter. We just got back from Lanzarote. The idea is that the warm helps his system, plus he can do very light exercise in the sea and get the benefits of the cold salt water. Swimming is one of the things he can do very gently, but unfortunately his skin is really reactive to chemicals so he doesn't get on with chlorine which means we can't really use our local pool :( :( He also takes a lot of natural supplements, suggested by a chronic fatigue specialist that we have. This is supposed to improve his system. There is some suggestion that M.E can be related to low magnesium, so he takes that, among other things.
Just initially to take up your point about earnings inequity....

Just because he is homebound etc doesn't mean he can't work! If he can play computer games, he can do 'other stuff' on the computer etc, or at his desk. Most jobs these days anyway are sedentary.

Can't he retrain for something like accounting or whatever, that could be done 'free lance from home'? Or IT? (working remotely). Whatever his skill set is. He could even do 'day trading' via the computer - start small and be careful etc etc.

The point is that he MUST 'contribute what he can', BUT also that earning ANY kind of money at all, from ANYTHIGN is GOOD for his self-esteem as well.

What has he tried so far?
He most definitely could do internet shopping for you!!
Rachel_1811 wrote:
Sun Nov 25, 2018 8:16 am
MrsAverage wrote:
Tue Nov 20, 2018 10:27 pm


My biggest problems and feelings... big questions! :)
To be honest the perception of others is what I really struggle with. It's the constant feeling of judgement because people don't understand M.E... the idea that he's not 'actually sick' and that he's just 'lazy' which just simply isn't true. We are planning our wedding and my parents still seem to make tiny references to the fact that I could just call it off on a regular basis, that I find really hard.
Also I suppose... and I feel bad for saying this... the slight feeling of inequity. That I work to earn for us to live, but also support him with everything at home. I guess I always thought i'd have a partner who was contributing equally to our lives. It worries me for when we want kids, which is something I've always wanted. It's hard to come to terms with the fact that accepting I love him means accepting a life which is really quite challenging. Every time I weigh it out he comes out on top though.. it's just sad that it has to be that way I guess.

Thanks for your kind words
Rachel
That's why I think contact with the various ME charities would help. You could be put in touch with others who have faced the same and 'get it'.
And your last paragraph explains why your parents are concerned for your future too. Have you discussed these feelings with him? I think you need to else niggles now will just grow. It may be that he feels the same, or has concerns of his own. Marriage really is about being truthful with each other and sharing feelings. You need to start on the same page to have any hope of living the same story.

Xx