Carers UK Forum

All parents want the best for their children! You will too, if you are able to have any, given your husband's condition....

Love can conquer a lot, but seeing a beloved child make a sacrifice of their life is HARD for any parent to accept, so I don't think you can be surprised that they are worried sick about you dedicating your life - your ENTIRE life, and your chance of having children - to a permanent invalid.

I know that sounds harsh, but it is because your parents love YOU that they worry so much about you loving your partner!

How does your partner feel about 'tying you down' to a permanent invalid? Does he want you to be 'free' or is he only 'too keen' to have you there looking after him for the rest of his life?????

I'm being DELIBERATELY 'bleak' about this, but at 25, alas - and yes, I am going to sound like your mum here! (plus I'll probably remind you to wear a vest in winter and be careful around strange men buying you drinks in case they spike them etc etc etc!) - you have 'no idea' about looking back on your life in another twenty-five years time and wishing with all your heart you had not made the decisions at 25 that you did make.....

And, yet again, since none of us CAN 'look ahead' (I can't imagine being 90 wishing I'd done different things at 60!), we do have to make the best decisions we can at the time we make them.

I would suspect, with my 'mum-hat' on still, your parents are hoping you will continue to 'delay' your marriage. An adult child 'living with' someone sounds so much less 'committed' than a married woman. I know divorce is commonplace, but obviously it's more traumatic than parting with a live-in partner. And, of course, the REAL 'biggie' when it comes to changing your mind is when you already have children. That is actually FAR more 'divisive' than divorce or 'spilitting up'.

Also with my 'mum-hat' on, I suspect that one of THE main problems (possibly even the biggest!) for them is that YOU are keeping 'this man' and he is 'living off you'. That isn't something that any parent could want for their child.

It's why I think that focussing on your partner doing something (anything!) to 'bring in a wage' so he isn't 'leaching' off you, would enormously reassure your parents. What can be done about that, do you think? (And it wouldn't just be for your parents, obs - it would be for YOU, and most of all, for your partner's self-resepct and self-esteem. NONE of us like to be 'parasites' on anyone else, however 'justified' the circumstances - ie, through illness. I'm sure your partner would be much happier 'pulling his weight' financially - and I don't mean just by contributing his Pip or whatever!.) (PS and if he ISN'T longing to 'bring in a wage' THAT IN ITSELF is a MAJOR No-NO!!!!!!!!!)(like a bloke having a girlfriend who 'loves' him 'spending money on her'. NO NO NO NO NO. Dump NOW!!!!!!!) IParasite alert!)

All of my post above boils down to the question - do you think your partner is 'taking advantage of your love and compassion' or do you think he 'feels bad' that he can't 'pull his weight' because of illness?

Do you think he is 'making a real effort as much as he possibly can' to minimise the adverse effects of his illness on your partnership (including financial adverse effects)? If so, then he is 'worth' your love and devotion.

'Effort' is SO important when it comes to illness/disability. If they are really and truly TRYING to minimise the negative impact, then they deserve ALL credit. I hope this is so with your partner!

We 'should not' love people who are 'not worthy' of our love and devotion. It is just 'not on'. But it IS absolutely right to love those who have had genuine misfortune (eg, illness) and who are 'striving against' that.

I'm now a widowed 66 year old. I have learned that you can never have everything you want in life.
So I'd like to give you some food for thought.
It's one thing to make a conscious decision, but another to sleep walk into a nightmare, or do something that you will regret for the rest of your life.
There are too many carers here who have sleepwalked into a situation they have found intolerable.

You are capable of

Looking after him
Working
Having a baby

BUT NOT ALL THREE!

if you opt to stay with your fiancée, then it might me in the future you face the prospect of not having children, because if his health doesn't improve he won't be able to look after a baby or a young child, so you won't be able to work.

What sort of a life would your child have? My heart breaks for children who are carers from a very young age.

Try to think of yourself at my age, looking back on the best years of your life. What do you want to achieve? How will you manage your dreams? I'm not telling you to do, or not do anything, just want you to make a really considered decision.

Thinking about your priorities, love for this man, your career, a baby, is a matter for you alone, not us, mum, him, but yours. Maybe counselling would help, the opportunity to discuss this with someone impartial?

Rachel, just to reassure you that we aren't saying 'this guy is a loser, so dump him and find yourself some high-flying city type blah blah blah!'. Only to help you evaluate important things from life.

Yes, none of us get 'everything we wanted' (well, I know I didn't - and looking back, I can see JUST where I 'went wrong'!!!!)(sigh) (oh, 20;20 hindsight indeed!), BUT, and I think this is important, I also DID get things I never even knew existed, or dreamt I could have! I've had a 'quite different' career and life form the one I thought I would have....and married a man that all my friends used to laugh at me for as he was the very LAST type of bloke they thought I would end up with!!!!!! But it was a successful (if bumpy!) marriage and for the world I would not have changed it (except losing him to cancer in middle age....)

And that last point is another essential one for 'young folk' - make the very, very, very MOST of what you DO have now, and for as long as you have it. None of us know what is 'around the corner' and if you have 'good times' to look back on, that is the most important thing, 'just in case' those good times is all we end up having!!! (the opposite, NOT making the most of things, is something to regret if things 'go pear shaped' because of circumstances later on.)

Going back to your original post, what strikes me is that your chap is clearly a high intelligent graduate - (and I say that because the one thing that 'all graduates' obviously have, is a keen mental life!)(ie, by definition!) so, two questions follow on.

The first is - what was he doing workwise when he had to give it up because of the ME? The second is, what did he read at uni?

The first, obviously, could point to what 'paid work' he might STILL be able to do (and as I said earlier, this is important not just for you - that feeling of 'inequity' you mentioned yourself - or for 'reassuring' your parents he isn't 'living off their daughter', but mostly for HIM, for his own self-esteem and sense of 'worth and usefufulness')(men HATE being 'invalids - especially if they wer sporty originally etc)

The second (whilst obviously affecting the first - eg, if he read English or Media Studies, no point suggesting he could 'retrain' as an engineering designer or something!) (though it wouldn't be impossible, if he 'started afresh' remember!) (in fact, read below).....is that the one thing he must NOT do now is 'intellectually vegetate'. However physically poorly he is, he can still use his brain, and that is what he should do. Now, even if he can't (for reasons I can't actually imagine at the moment??) retrain or extend his original qualitifications etc, to enable him to work from home in ways he still could, or whatever, what he CAN do is 'keep learning'.

Even if he were learning, I don't knowsomething like an obscure Asian language, or Art History, or something that is NEVER going to 'earn him a living', the purpose is to learn for its own sake - to use his time to exercise his brain and show ROT (Return on Time). Again, this is about his own self-esteem. Yes, it might never make any money, but it is better than spending his days doing nothing and 'mounging about' or playing computer games (SOME gaming is OK - depends how long!).

Idleness 'rots the soul'. It rots the soul of rich people who don't have to work for a living, and it rots the soul of those who CBA doing anything. Showing 'return on time' is essential for all of us. NONE of us should 'waste our days' - obviously some 'leisure time' etc etc is essential (and deserved), but 'idling' per se is NOT acceptable. What we CAN do, illness permitting, is what we SHOULD do.

'Just because' he has ME does not mean he has to 'waste his life'.....he just has to find a new way of living it.....

PS - at the very least (or, if you look at it another way, at the very most!)(ie, possibly THE most important thing he can do with his time) is research ME! (It will also encourage him, surely, to see what is going on in medical terms and treatment eetcetc)

Who came up with the auto-immune protocol diet (sounds really interesting - I'm going to suggest my niece with chronic FM and IBS look it up!)(she's a veggie already, but there might be good stuff in it for her, too!)?

Also, on the 'obscure tropical infection' front, do be aware that these days, the Internet can really help in individuals getting an accurate diagnosis by 'searching the world'. I found that out when my husband was diagnosed with a relatively rare cancer - by opening up searches for support groups 'internationally' I discovered so many more patients globablly with his kind of cancer, and there was a lot more 'going on' in that field than was immediately obvious in the UK.

(I am probably quite daft telling the online-generation like you to search the Internet, but there you are!)

Just to say, before I get into the details of what's a very long post: I admire your love, honesty and compassion. Your partner is truly lucky to have you in his life. It's hard being a carer, or even watching while someone you love struggles, but your partner undoubtedly needs you more than you need him. Your devotion is a positive thing. I'm sure he's grateful, and you're making a difference to someone who really needs you. I don't doubt his love for you, nor yours for him.

Secondly: this shouldn't be considered formal medical advice. I'm just offering a summary of what I've learned and what you may find helpful. I'm not going to suggest specific drugs, but there are some practical tips that you can do at home which are safe and used by lots of patients.

With ME, your partner is likely to have neurocognitive symptoms. Therefore, it may be unrealistic for him to do even remote freelance work (such work is not easy and requires a significant investment in time and energy just to find your next contract--I know, because I'm self-employed and have been for 14 years). Freelance work can be incredibly stressful. There may be self-esteem issues tied to earning or not, but I think that's a private thing for you and he to discuss together. If his contribution comes in the form of PIP, or even just his love and companionship, then that may be enough for you and you can reassure him of that. Only you and he can decide what you both need to get out of this situation.

Additionally, not all contributions have to be financial. Your partner may make music or draw pictures. You can encourage those hobbies and skills, which he may find even more rewarding than monetary contributions. Raising awareness, moving others and creating beautiful things are as valuable, if not moreso, than money.

Obviously you need to eat, so if your partner is on PIP and you're caring for him 30 or more hours a week, you may be entitled to a carer's allowance. Otherwise, look for local voluntary organisations that can help (Action for ME is setting up a scheme to help patients find volunteers who can help them with caregiving).

I would join a patient organisation or local group. Most welcome carers, and you deserve good health and wellbeing too. If this helps, don't feel guilty about it. Many patients are happy to see healthy people and loved ones who 'get' what we're going though. It also provides a support network and people you can turn to for advice. ME is very poorly understood, so ME-specific groups will give you more detailed and nuanced help then generic groups.

ME can fluctuate quite a bit, but the key is good pacing. He should try to learn what his limits are and avoid exceeding them, where possible. That should allow him to stabilise and be more consistent in what he can do, which takes some of the frustration out of this illness.

A Fitbit may be helpful, because you can watch his heart-rate (guidelines suggest he stay within 40-60% of his maximum, age-based heart-rate). You calculate maximum predicted heart rate in men as: (220 - age). You multiply this by 0.4 and 0.6 to give you the upper and lower range. More severe patients will be closer to the bottom, while milder patients will be closer to the upper limit. If you monitor this, you'll get a good sense of which activities and what heart-rates precipitate a crash, and thereby hopefully avoid the worst.

The NHS/NICE guidelines suggest you don't exceed 75% for safety reasons, though it may take some time to figure out what his safe range is. More info on pacing with a heart-rate monitor here: http://www.cfidsselfhelp.org/library/pa ... y-envelope

In more severe patients, pacing is still really difficult, because eating and daily energy expenditure can sometimes be enough to trigger post-exertional malaise. All you can do is help him avoid deterioration in that case. If he has migraine-like symptoms (such as sensitivities to light and sound), limiting these stimuli somewhat might reduce his energy burden and help him feel more comfortable.

A good rule I learned was to use only 60-80% of the energy you think you have, so that you can build up a 'credit' in your energy bank account. In time, that means he may have some days where he can do things he enjoys, like going out or having friends over. It does make all the difference.

Another practice is called 'switching'. It's related to pacing, but involves usually different muscle groups and senses. So if he listens to music for 30 minutes (sound/hearing), he does something like reading afterwards (sight). Try to break the day up with adequate rest periods, which should be relatively quiet. TV and the computer can be quite intense, cognitively speaking, so things like the radio, audiobooks or reading are preferable. I try to limit TV and screen time where possible.

Once he understands his limits, it's possible for him to slowly improve or maintain a stable level of function, which should make everything easier. The worst part of this illness is how unpredictable it is before you figure these limits out. Only about 5-7% of patients completely recover, but about a third improve somewhat (some quite a bit), another third remains stable but doesn't get worse, and a third gets worse (usually through trying to ignore their symptoms and pushing through).

If he finds himself improving, something like the Pomodoro Technique can help with productivity (you work for 25 minutes, take a 5-10 minute break, then work for another 25 minutes). More info: https://en.m.wikipedia.org/wiki/Pomodoro_Technique. The trick is not to rush into doing too much, too soon.

Your partner might also want to consider treatments for sleep and pain, as fixing these issues alleviates some of the fatigue (which is usually cumulative--gut issues, pain, sleep, sensory overstimulation, etc, all make it worse). The idea is to take just enough to reduce symptoms without feeling groggy for more than about 30 minutes after waking up. Sleep hygiene works for some, but because the autonomic nervous system may be disrupted in ME, some people can't achieve proper sleep without help.

It sounds like you're dealing with his gut issues, which is positive. Some of the medications for sleep and pain also help with gut problems. Some patients also report blood sugar issues and insulin resistance. This can be addressed by switching to complex carbohydrates (starches) rather than simple ones (sugars). Some patients do keto, which was developed for epilepsy in children, but that's hard to do if he's moderate to severe, or has a restricted diet anyway.

Good sources of information are the ME Association, #MEAction, Stonebird and the 25% Group (the latter two for severe patients). You can join a forum like Science 4 ME if you're interested in learning more about the emerging science of ME, or if you want honest advice on what to try (people can't offer medical advice, but they can talk about their own experiences, and many on that forum understand the science really, really well.)

Don't let anyone tell you he's lazy or making it up. Don't let anyone tell you what is or isn't worth it for you. Only you can know what your love gives you, and you don't need to explain it to your parents or anyone else. Here's a song about loving someone despite the views of others which I always love (it's actually about homophobic laws in America keeping people apart, but I think it's apt in this case too): https://m.youtube.com/watch?v=Lc05jL1d8h8

That sounds like really helpful advice from Adam - and sounds like he knows from his own/partner's experience??

I do agree freelance work can be stressful, but it also has the huge benefit of usually being 'piecemeal' - you can do a 'piece' of work, get paid (though ensuring payment can have its own stress, sigh, as commissioning eds etc are not always 'prompt to pay'), and then have a rest.

As I see it, the point of 'work' is not ONLY to bring in money, BUT also for self-esteem and a 'sense of purpose'. That's why I say 'idleness rots the soul'. Achievement is crucial to the human psyche, but WHAT we achieve is 'up to us' (and what we CAN do).

To me, it's that sense of 'Return on Time'....of course some time should be 'down time' (ie, R&R!), and when you are an invalid obviously too some time is 'being ill' time (however frustrating!). But showing 'something for your time each day' is SO vital to a sense of well being.

Interesting what Adam says about ME causing the 'brain' to be tired as well - and of 'swapping senses' to focus on.

Hi. I am a few years older than you now but I first met my now husband at university too and I have cared for him ever since although we only found out why I have had to this year when he was diagnosed with ASD and ADHD. I just wanted to say I totally get what you are saying. To me it has always been the case that I loved him and would do whatever it took to be with him but whatever it takes frequently brings me to my knees. Our relationship is not equal -although he does work full-time that is only with massive input from me and I also work and do most of the housework and look after our two children. It never will be equal and I have had to mourn that other life. At times that is still really hard for me to accept. Many people don't understand what ASD and ADHD are and the impact it has on our lives and that includes both sets of parents and most of my friends and colleagues. It is terribly lonely sometimes. What I would say with my 19 years experience is it is totally possible to build a life together in an unequal relationship but your love has to be very strong because it will be repeatedly tested. You have to find people who understand and are there to support you in supporting him because you will need it and especially if you have children. And who understand that it is totally fine to vent and feel fed up with your life because as my friend said it is never going to be the John Lewis ad.

Some useful advice here, particularly from Adam - thank you very much, Adam - I'll take some of it, too!

In addition to the MEA and AfME, you might like to have a look at the forums on http://chronicfatiguesyndrome.me.uk/ and/or the Phoenixrising website. In addition, do feel free to send me a private message (I think they're going through all right) if you want to chat with someone in a similar situation. It's late, and I'm trying to get to bed earlier than I have been, so won't write much now, but you most certainly aren't alone.

Hi Rachel

I know you posted this a while ago but I'm new to the forum and I'm in a similar position to yourself. I'm 29 and my husband is 45 (bit of an age gap I know). He had a stroke 19 months ago and now has aphasia which means he struggles to express himself using language and also understand language communicated to him - whether its spoken or written. I've tried to carry on with my career since he had the stroke and eventually got to a point in December where anxiety and depression just consumed me and I've been on sick leave ever since. I've made the decision to take a career break for my own health and sanity as it just proved too much for me to balance the pressure at work with the extra effort it takes to communicate with my husband, all the hospital appointments and the fact that I have to do about 90% of the housework plus all the finance/bills etc. So I completely understand that its difficult to juggle both the work and caring role without feeling that you're failing at one or both!

I know you said that your family don't want you to stay with him. My family have been great but I have had people ask me whether I would leave my husband and tell me they wouldn't blame me if I did. I'd be lying if I said the thought never crossed my mind but like you I love him despite him being sick. I can't blame him for what's happened to him and I made a commitment to stand by him. Yes it would be easier to leave but if that isn't what you want then why would you do it? My thinking now is that even though we can't have the life we planned to have it doesn't mean we can't have an amazing one - just in a different way. Obviously your circumstances are individual to you and you might not always feel like you want to stay with him - and that's fine too. I just wanted to reply to your post as I felt there were some similarities there and it's nice to know we're not alone!

It may not be of any interest but I started a blog about caring for my husband and all the rubbish feelings I've had about it along with the good stuff as well - if you want to read then its www.wedontneedwords.blog

I hope you're both doing well