guilt and struggling to balance ME and relationship with husband

krh

Hi everyone, just looking for some support really from others with a condition that affects all aspects of everyday life really. I have been with my partner for 4 years, married September. I was diagnosed with ME July last year although this relapse started the year before and due to lack of capacity at ME clinic I was off work a total of 6 months, I have finally got to work but had to drop hours a bit from 36 a week to 30 as a special care baby nurse on 12 hour shifts. I know I am very lucky as my condition is improving very slowly and I can work but it has taken a long time for me to even function properly and I still don't feel 'fully recovered'/ what's normal for me (kind of forgotten what that's like tbh), a busy shift flattens me still and I still have to scale things back a lot at home.  I also find it hard as now I 'look normal' and can function well at work but they don't see the impact it has on me later or during the day as I can hide it now, same at home, I can feel crap now and look ok. I am much better now but still affected in everyday functioning. 

My husband has been very supportive and fantastic but I still feel very guilty at times that he is working full time at a manager level and has been/ is still caring for me; when he comes home I ask him if he can do things for or with me because I still can't (which I find very difficult to as I used to be like superwoman and could do DIY, painting, zumba , body combat, all sorts and I loved doing things in my time off) but he is drained from work, tired and takes so long to get round to things sometimes but because I am at home full days on days off, these things are bugging me and there all the time. (I have learned not to tackle them if my ME doesn't allow it but it's still a learning curve.)

Joel has recently been promoted and had so much extra duties and responsibilities piled on him, is expected to travel to spain 2-3 times this year, canada for a conference etc as well as projects on top of his usual duties I think he is struggling to adjust to it, he's feeling overwhelmed and a bit low and I worry about him. I also worry and feel immensely guilty that due to learning to manage ME and my underlying anxiety I have been rather self absorbed for a long time but it's the only way I can function to ensure continued improvement and I'm terrified of relapse. I talk to him alot and I do what I can when I can and make sure I do things like make his lunch for work for him and cook as often as I can, pick up a magazine or DVD for him, for example but I don't think he always talks to me completely honestly if he feels rubbish as he doesn't want to worry or stress me.

I just don't know how to navigate this as I feel guilty about dropping hours (although I get some PIP as unable to work full time), not doing as much at home and needing Joel to do it, relying on him for mental health support (I do rely on my parents a little too) and guilty for when he is struggling if I have a wobble or a bad day he takes it all on. I do tell him how it is but not full extent as he feels awful then hides how he is feeling so as not to upset me. He does it for good reasons but I have been a carer before and am aware how it affects the relationship and the extra pressure it adds. We do love each other very much and do leisure activities together, share same interests, I don't feel the relationship is in trouble, I just don't want my issues to add extra pressure for him when it's not something he can help with.. Sorry for the long post, as you can see this is 18 months of worries that keep resurfacing! any advice or support would be greatly appreciated.

thanks for reading

markyboy

You need to contact the ME Association they have a help line to offer you support and talk you through your worries of living with this horrible condition 

Richard_Scope

Hi @krh

Welcome to the community and thank you for sharing your story with us. At one time or another, I think that those of us with a condition or impairment can feel guilty for what our partners do for us or that we aren't able to reciprocate to the same level. I know I do occasionally. So, you are not alone in thinking this way at all. Our relationship expert @PSHEexpert may have some advice. Mine would be, keep the lines of communication as open and honest as you can. Talking and listening to each other is so valuable and important.

markyboy

I have had ME for 8 years and you need to pace yourself and think before you do anything because if you push yourself it will come back and bite you the next day as it is a long term condition you can feel that you are getting better then it comes back with a vengeance 
8 years ago i ran my own business working 12 hour days and now having a shower uses my whole days energy up and i have to go back to bed and yes you do feel guilty and reflect on what you used to do but the worse thing for ME is stress

Antonia_Scope

Hi @krh thank you for sharing this with us. I'm sure a lot of our members will be able to relate with this, so feeling like this is understandable, so please don't feel guilty. You may also be interested in our mental health discussions and dealing with chronic pain

Please keep us updated or if you have a question let us know

izy

Hi there

I've had Crohn's for 30+ years and I felt this guilt when I was bedridden. One year I had 2 crucial operations and was off work for  6 months and therefore any odd days off I had while getting my strength back were only paid at half pay until a year after the 6 months off.

Communication is the key. Don't wonder what hubby thinks about something, ask him. Let him know how much you appreciate him and if he brings you a cuppa when you're drained, hold onto his hand an extra 2 seconds and smile with a little Ta! Leave funny notes in his pocket like "I'm only letting you run faster than me at the moment cos I like looking at your bum!" Silly things. You can find wee thank you, sorry, all sorts of quips online.

 tell him you may be weak after a shift in your body but it doesn't stop you being able to listen to his work worries and a problem shared is a problem halved, as they say. Tell him you won't get more ill  by hearing his woes, but you will get ill  worrying if your marriage doesn't survive.

I wish you all the very best, dear. You sound like a wonderful wife, and your hubby sounds like one in a million too. Talk.... and lots of hugs!

Best wishes

Izy

clare_1

Hi
Although I don't have ME, I have functional neurological disorder and I get alot of what ME suffers get.
I also have a partner who works and looks after me. I feel guilty and don't  feel good enough for him and wonder if he would be happier without me. He always says he dont mind and I make him happy but night like tonight where I've woken him up and he has to be up at 5 for work.
My doctor sent me for counselling and CBT ( changes mind set and thinking). I found it helped alot but still feel bad on days when pain so bad.
I hope you get the help you looking for and know that there is someone to talk to about your feelings

krh

Thanks everyone, I've had CBT before and generally manage quite well on the whole now, but sometimes my thinking brain switches off! Although I've had this a long time it's a new diagnosis and everyone has bad and good days. Your advice and support is great and much appreciated x