Help for the Partner of someone with M.E.

Brain and nerves
1

Evening, I am not a patient, but I am seeking some advice from M.E. suffers as to how I can help my parner, who was properly diagnosed about 16 months ago, following 3 years of failed DRs misdiagnosis. It has got to the point that we have had to postpone our marriage next year as she can not cope with the stress of it all and I am begining to think if we will ever get married the way it is going as everything is a struggle at the minute.

I am 30 and work a demanding job on long days and often not getting home until 7pm, she is 26 and works a hassle free job on flexi time and is home by 5.30. We have a lot of livestock which commits us to a day most weekends and also uses up a lot of our holidays, though it is our only hobbie and we enjoy it. Neither of us want to give this up.

We eat well, though not usually until about 8.30 most nights. I make breakfast (porridge), lunch (salade with fish) and tea (usually meat and 2 veg). I find that she is very picky over what she eats for lunch and quite often will skip lunch if what she has made her feel sick last time.

She is finding it hard to cope with the lonelyness of coming home to an empty house until 7pm, then feeling tired from 8 most nights and sleeping on the couch until about 10.30, before struggling to make it upstairs for a shower, quite often her body aches that much and she is tired that she can not make it up the stairs or in to the shower. Our conversation is next to nothing as she is too tired nearly every night.

The most minor things seem to make her streesful, she is worried about going out on a night now with friends past 11pm and struggles to keep going generally. She has tried Piliates, but found her body couldnt cope with it. Anything to testing is always a struggle and we are always snapping at each other because of it, but I am finding it hard to cope with her condition and change.

Any helpful tips / advice from M.E. sufferers will be much appreciated as she seems to be on a right downer at the minute.

Many thanks,

 

2

Hi Tom,

I am sorry to hear about you and your partner's plight.  The advice I would give you as a sufferer first of all is at 26 she is relatively young to overcome this or live with it at a pace that suits both of you, but first you both will have to be very realistic about this debilitating illness.

This condition is a very serious one and if your partner is going to carry on at the pace she is going, she will have a major relapse which could significantly damage her heatlh.  I am no health professional but have lived with this condition for 7 years now.  I was diagnosed in my 40's.  I was a mum to a teenage daughter, held down a part-time managerial position and then I had a major relapse in 2013.  CFS/ME can leave you housebound/bed ridden unable to take care of yourself, and in a lot of pain mentally and physically.

You have come to the right site however for advice.  I think I will be that of many to advise her to pace herself.  There is no way she can keep working, going out, attending animals, and exercising without the possibility of seriously damaging her health.  The key thing is that you have to listen to your body and we are all different, and slow down.  You both will have to change in a number of ways.

My husband is up at 4.30 a.m. and not back until 5 p.m, I can no longer work.  I have been in and out of a wheel chair, and now walk with a crutch. It can be really debilitating and can be very lonely when you have CFS/ME and to progress you need the support of family and friends.  This is a task in itself as many people just do not get it because we look well a lot of the time.  You will have to be prepared for the low moods, the cancellations of social activities this is all part and parcel.  Action for M.E. is a brilliant website, but unfortunately it is down at present because of their provider going into liquidation but there is a helpline there on a static page if you need it.

If work becomes too much for your partner she may have to give up or take less hours.  Her employers should know about her condition and she is protected under the Equality Act 2010 which means that they have a duty of care to put in reasonable adjustments to make her life more easy e.g. rest breaks, equipment, to name a few.  She may also be able to get the PIP benefit which you can claim if you are working or not, this is to assist her.  I use mine for a cleaner to help me and have saved to have bathroom re-adapted to enable me to shower independently. 

She should tell her friends and as they are friends they should realise that she can no longer do the long sessions, and may be they could arrange something more suitable to her needs.

As for you Tom, I do sympathise, my husband still struggles to come to terms with my condition but you can get through it together but it is and will be a bumpy ride.  Some people get over it, some have long periods of remission, some of us have it for years as you will see from some of the answers you may receive.  That is why it is imperative for your partner to slow it all down, exercise is not recommended especially in the early stages, and then graded as your health improves which some of us have found puts us back a stage or two.

I wish you both a successful journey, and hope that marriage one day will take place.

Keep tuned into the site you will find many people there to offer advice.

Good luck to you both and hang in there.

Tx

3

Hi Tom,

I wonder if there is any chance your partner could actually reduce her hours as it sounds like you too aren't getting alot of couple time due to her being exhausted? I think accepting the cfs/me diagnosis can be one of the hardest parts of all this. Accepting that life has limits. Accepting that things have to change, even if that Is just temporary. It sounds like you are trying hard to help things, making the food etc can you put some time to oneside just for each other? At the weekend? Or when you're not working? to just do nothing together.

Its difficult for both of you right now and you both have your feelings pushed to the limit. I find It hard to deal with others demands myself. Christmas is already an Issue as I offer a family meal out somewhere before christmas but am being pushed towards having to spend boxing day with extended family. It makes me sad that I try but my feelings are shelved even when I offer my time and energy In a way I can cope. trying to keep people happy is hard when you have this condition. I can honestly say I've never experienced anything like cfs/me! It is awful on some days and It can be hard to keep your pecker up. My advice, try not to let yourself take it all on your shoulders. Let her scream, shout, cry if she wants , its because of the condition, you need the release. I hope you can regain your "couple time" soon.

Check out me/cfs on the net to help too. Its such a hard condition on relationships, family, friends.

Hope it helps

B

4

So sorry about your situation. I know how difficult this is, because I've had ME/CFS for over 15 years. When I look at your partner's level of activity, all I can say is, "Yikes!" Working 5 days a week and then taking care of livestock 1 day on weekends? Based on my own experience, that level of activity will not put your partner on the road to recovery. In fact, it could hugely get in the way of her recovery. She has a big window on her chances for improvement in the first 3 years of the illness. To take advantage of that window, and maximize her chances for getting better, she needs to rest, rest, and more rest. Pacing herself is extremely important. Before I became ill, I was a very active person, as were all of us on this forum. My husband and I had co-authored a book, we'd worked with an architect to build a house, and I had a job that I loved as a technical editor for a research firm. After my diagnosis, I behaved as though pushing through my fatigue would be a good thing. I also started taking long walks, which I thought would help. My doctors did not advise me of the folly of this behavior. So I became severely ill. You can't push your way through the fatigue of this illness and keep up a high level of activity. I think you both need to sit down and rethink your strategy. Eating healthfully, which it sounds like you're doing, is a good thing. But I think you need to work out the "rest" part. Best of luck to both of you. You can make this work. My husband and I have been married for over 30 years. We've had to adapt our relationship to the reality of me being ill, but it is possible.

5

Hi Tom 

my hubby has m.e and I feel for you . For the first 3 years he worked reducing his work hours to part time which meant his social and weekend remained the same but by the third year he wasn't well enough to socialise he was sleeping every afternoon and finding large gatherings stressful noisy places stressful ..so he decided to have 6 months off work on sickness benefit ... This is when he finally got diagnosed with m.e. But he was in denial.. In 6 months I will be well. During the six months he took on lots of voluntary work we moved house etc etc ...

he got worse ( this was actually a good thing) in hindsight. He had to face the illness almost give in to it ... But not totally just adapt but how ??? 

He asked to be referred to a m.e. Clinic in our local hospital ..our GP was reluctant waste of time etc we insisted ..that was 2 years ago now .. He saw a specialist who told him you will recover ... (I know some don't but many do) and the positive ness was so needed then she referred him to the occupational therapists from the m.e clinic once a month she came to the house she was fantastic cognitive behavioural therapy and pacing and just an experienced person who knew how to help him..

by now I had wrapped him in cotton wool afraid he would worsen ...she explained you can still do things just plan how you can do it without wishing you hadn't .. So go to a party but plan to go sit in the car when you feel overwhelmed ... Go to a seminar but have your lunch in the car and have a sleep ...then have toilet breaks when u need a break ...leave early before you regret going ...

anyway he's improving 5 years now but I look back and this time last year he was worse and the year before that so it's working ..

but for you both and your relationship you need to sit down and discuss how your partner uses her 10 coins of energy each day ... If she uses 11 she will worsen. 

But if she uses all 10 on work your relationship will suffer .. You need to adjust .. Having some coins for you both .. Some for her and some for work ..and if weekends she is totally exhausted she's using more than 10 a day on weekdays ...

you may have to make big decisions together .. A friend of ours got m.e and changed his job from a physical job to selling goods on e bay as he could cope with this from home ... 

My heart goes out to you ..

my tip as a carer hate the rotten illness separate it from the one you love and you will come through this with them 

Sally 

6

Hi Tom, I appreciate this will sound much simpler than it is to achieve in reality depending on your individual situation but is there anyway you can change your situation workwise?  it sounds like no matter what changes you make for your other half it won't change the fact that if she is always tired at that time of night you won't have much quality time together, sorry if that sounds too simplistic and unhelpful but in your current situation it doesn't really sound like there is much more you could do, there just aren't enough hours in the day.

It's great that you already do as much as you can by the sounds of it, more than most would, I think you are doing the right thing by postponing the wedding and focussing on how you can make your lives better together, it's pointless to try and plod along as normal, I have tried and failed many a time!  

She may have a hasslefree flexi time job but unfortunately for us it probably feels very much like holding down and fulltime job, that must sound ludicrous to someone that works the hours you do but the smallest of things really can wipe us out.  

My other half use to run a small-holding so I can fully understand that you would not want to give up the livestock, if its something you enjoy together personally I would try to hold onto that as long as I could, although of course that's a decision that only you can make together as every situation is different.  

As for the snapping, unfortunately comes with the territory of being tired ALL THE TIME, my other half is so used to it that now he quite often clocks when we are about to go into one of those moments and he smiles and mucks about telling me to "come here it will be alright" almost sarcastically trying to make me smile and hug me when i least want to, I try my hardest to fight against smiling but I can't, either that or I'll cry and tell him to leave me alone its not funny, but one way or another it always diffuses the situation and I can never end up not coming back to give him a hug. 

It must be tough always having to be the one to take control of the situation and not let it flare up, but I think at the end of the day he steps back and thinks he would rather have his life than mine anyday.  This is always going to be tough on both of you in many different ways, but as long as you keep pulling together and keep reminding yourselves the situation is no-ones fault you will be helping her.

I quite often wonder why my other half sticks around, i've given him an out at every corner to go have a normal life, but I guess underneath it all he see's what most other people don't see about people like us, we're in here somewhere, we just struggle to get out!   

It sounds like you already do a lot and i'm sure your partner appreciates it more than she is able to show, maybe you should try to find a way to simplify both your lives rather than just hers, i know it won't be easy and won't happen over night, but might be worth some thought

As for friends, I don't do late nights with friends anymore either, if they don't accept what little I have left to give they aren't real friends, perhaps they could find a way of including her in a more low key way, they can still then go on to have their late night if that's what they want

7

Evening All,

Many thanks for everyones replies, much appreciated. I think it is obvious that my partner is doing too much and that we need to have more quality time together.

In terms of diet, she has said already noticed an improvement, having cut out nearly all unnatural sugars. I have been told that fish is a positive, so will continue to incorporate that in her diet every day. Though it will be a bit of a balancing act, trying to change the menu, so she does not start feeling sick after a while.

In terms of my work, I can not really change much, as it is what I have qualified to do and the pay is good, but I do think that I need to be more supportive on a night, so I have arranged for a works laptop, allowing me to work from home and get home for say 6-6.30 where possible, instead of 7-7.30, this will allow for a bit more quality time on a night as well as an earlier tea. To be honest, alot of it I guess is down to disciplin of the individual.

Can I ask, is it something which one will completely overcome? As by the sounds of it, many of you have been suffering with this illness for a number of years and now rely on a walking stick. I am worried that my parner will only get worse, going off what I have heard.

We do keep a lot of sheep (up to 200 with the lambs) and a handful of cattle, so we may need to address what we do with them, but it is a passion we share together outside of work and I find it provides my partner with an interest which keeps her motivated. If there was no interest / hobbie which we can share, then I personnaly believe that may do more harm than good, but I could be wrong.

Thanks for advice thus far!

8

Dear Tom, what she needs right now is your unwavering support.  I know how hard it is.  I have been married for almost 20 years, and I am currently suffering greatly from CFS.  My mother in law makes things worse by telling me stuff like:  "Men who have sick wives get wandering eyes."  She is very cruel.  My husband is terribly stressed by my condition, and it is so frustrating for me.  On most days, I can't even make it out of the house.  I have abandonment issues as my father abandoned my mother and me, so I have been very insecure.  I am usually a very motivated and productive person.  So, if you really love this woman, please reassure her that you aren't going anywhere.  Also, please understand that when you are so tired that absolutely feel like you are dying, it is so disappointing and frustrating.  It isn't her fault.  I am so happy you reached out instead of just leaving her.  There are a few things that she can have her doctor check out.  If her thyroid level is above a 2.0, she may have sub-clinical hypothyroidism.  Also, an abdominal CT to check for a hiatal hernia should be done.  That is where the stomach protrudes through the diaphram.  It can cause so many problems.  Google hiatal hernia/vagus nerve syndrome.  Most people have one and don't know it.  If her doctor won't listen or order these tests, she should change doctors.  I had a very large hiatal hernia surgically repaired in june.  Some of my symptoms have improved, but I am still experiencing debilitating fatigue.  So, If you can, please do me a favor.  Please pick up some flowers and dinner on your way home, and let this lovely girl know that you will love her and support her no matter what.  Trust me, she needs to hear those words.  Again, I know what you are experiencing, and it is not easy.  I feel for you and my husband.  It took him awhile to really comprehend this.  I know you can't read her mind, but I'm sure she is feeling insecure about yours and her relationship.  Just hearing that you love her through sickness and through health will make her feel better and probably relieve some of her anxiety.  I actually told my husband that what I need from him is to go a bit overboard in showing me his love and support.  Best wishes to you and your future bride.  I hope this has helped.

9

This disease can be overcome, though not everyone will get better. The best chances for getting better occur in the first 3 or so years. That's why it's so important to maximize chances of getting better during this 3-year window. That's why I, and others on this forum, have urged your girlfriend to dial it back and rest more. I know it's hard. Of course she wants to keep working and doing her hobbies. But it's better to cut back on all of that now, so that she has a better chance of recovering. The alternative is, well, my situation. I kept pushing and pushing through fatigue. Now I'm housebound. So now I have no choice. My body has made it for me. Do your best to keep a positive outlook and act out of that, rather than out of fear of what may happen.

 

10

Hi Tom,

Wow, that is such quick working with work and laptop at home! Yes, you will both benefit from that but your partner needs to look at reducing/ finishing work even as only temporary measure. The animals sound a full time occupation in themselves!

You ask if people get better and some do, some don't and some get worse. Rest and support is really essential from what I've heard. There is a thread here bout cfs and recovery by Seidman who recovered that I know of and a local physiotherapist who was able to gradually go back to permanent work. Both name supportive partners as key. As Your partner has you, whom sounds extremely supportive, I could see her having a greater chance of recovering but, both these people signed off work. My own story is I tried too hard to recover early on going to the gym, swimming, yoga, Pilates. I built up to 30 mins gym and swimming but, I was shattered even though all slow paced. This year I've postponed my activities until I feel more capable and It won't be everything! Planning is useful and adequate rest periods. What she could do easily before, may wipe her out now. Guilt can be real Issue with this. Help her to realize she didn't ask to have this, she has it at present and how can you work on temporary solutions to help that right now? Such as offering to see friends at your house etc. Good luck with this the pair of you.

Best wishes

B

11

tom,

hi there! i think it's admirable that you're reaching out, seeking answers and solutions to improve the situation. personally, i haven't been well enough to hold a job since my chronic fatigue kicked in 3 years ago - no more than 15 hours a week for me, and even that can kick my butt, depending on the week. i went from living in nyc & working in the empire state building to being forced to return to my parents' home in rural michigan, unable to support myself. i'm 37 and recognize, that with my health as is, i simply can't work more than 15 hours a week. perhaps you two can figure out how to make things work, with her cutting back her work hours even more, and seeking the right set up, that works for her body and where she is at in the illness. yes, it might make financially tight, but if it's love, then as wedding vows declare, in sickness and in health, for richer, for poorer.

best of luck to you two!

kat

12

Hi Tom 

yes lots do recover but sadly some don't . I can think of 5 people I know who have had full blown m.e./CFS and are fully recovered . I also know of 2 people who have not .. The illness even if you recover will rob at least 5 years of your life ...maybe more . I believe that there is more than one illness under the umbrella of CFS. And that because so many eventually recover naturally the medical profession haven't invested time and money into studying this illness.  Those who do recover don't talk about it freely they go pale when u ask them about it ... It's a period of there life they want to forget and always live in fear of it returning . 

My first hubby had it 7 years totally recovered he was housebound for first year , room spun continually . He got back to a physical job full time .. 

Sadly my present hubby has just got it ...but he has never been housebound like your partner he can drag himself about and has now with the help of his occupational therapist started to work with it and recover slowly ... He wouldn't accept he had it for a long time as he didn't want me to have to face living with this horrid illness again... He used to say it's not CFS its burn out .. Anyway there is hope .. But you will need patience. And sadly as a carer they have to make there own journey you can talk till u are blue in the face ... And u realise some things u say will be right and some things u say may be wrong cos this illness is weird ... They do improve sometimes by doing things you think will make them relapse like your sheep.. Feeling good about something .. Gives us purpose ..well done for taking this disease by the horns so to speak ...

13

the laptop's a pretty good compromise, just having you there a bit more will make a difference. It's hard to say without knowing her what particular things will help her, hoovering and dishes are my biggest downfalls that my other half occassionally surprises me by doing them, that always make me happy.  

The fish may be a bit much, I love fish but don't think i could eat it everyday.  can she cope with basic protein meals like omlette/boiled eggs instead on occasion? or maybe a homemade veg soup or a smoothie.   I know porridge is meant to be really good but I find it drains me for days, takes about 3 days to get it out of my system completely (i dont cope well with veg oils either so i think its the fatty acids as they seem to be the same types in porridge - although im no expert), I haven't met many other people with that issue though so thats not to say it will be the same for your partner, we are all different with what helps. 

I wouldn't lose heart about overcoming it, as others have said some people do, but also things seem to be changing with research, I think the NIH has re-classed things recently (according to SolveCFS) and looks like they are going to be taking steps forward with research, plus there seem to be other groups that are gaining ground with their own research, things can only get better from here, I know it can't come quick enough but i'm still hopeful 

14

Hello Tom,

I admire the fact that you've started researching your partner's condition and are looking for information to help the situation for both of you.  I'd agree with what others are saying to you about the absolute necessity of rest in the early days. I got this condition at 20, have now been married 28 years and have had four kids. It took me a very long time to get a diagnosis owever and by then I had done a lot of damage to my body and my chances for recovery.  However, one thing I would say to you is to remember to look after your self.  Of course you want to care for your partner and that is very commendable indeed.  There will inevitably be times when the situation will not only get her down but it may well get you down too.  In my opinion, based on how my husband has/has not coped with our situation over the years at times, he also suffers from this condition in the sense that he has had to let go of so much, so many hopes and aspirations.  I think it's very important to have your eyes wide open about this situation.  Before my husband and I married we talked about the possibility that I would get worse instead of better, and despite his intention to take whatever came it has definitey been hard for him.  I think support is what is crucial and for both of you whether that's from family, friends, support groups or whatever.  I wish you both the very best of luck.  I hope your partner can understand that with this condition it is sometimes necessary to just take a total  break from normal life at times and there is absolutely no shame in that.  She would really be doing herself a big favour if she can cut back dramatically.  My daughter's advice to me when I'm bad is cut back to nothing and then work slowly back from there. That's good advice because sometimes you need to take drastic steps which might seem extreme to others but may be good and necessary for you.  Good luckZ!