Saturday, 14 November 2015

Living with a loved one with Chronic Fatigue Syndrome/ME

Photo by Mayur Gala - courtesy of https://unsplash.com/
I’ve been wanting to write about this topic for a while, but I know that I’ve been putting it off as it’s something very personal, a serious subject and I guess I want to do it justice. If you’d like to find out more information about the illness, you can visit: http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx or http://www.actionforme.org.uk/get-informed/about-me/
The Spoon Theory is also a good analogy: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

My wonderful husband has CFS and I hate it. We obviously try to concentrate on the positive, but I hate seeing him suffer each day and how it impacts our life together. I admire him for his courage, tenacity and his positivity. I feel honoured that he chooses to spend energy and time with me as with any limited resource, it must be about prioritising your choices on any given day.

I admit that I can find it tough sometimes and I can feel a little envious around couples where both individuals are in good health. I sometimes feel guilty for being well and for being able to participate in things that he can’t. I sometimes find it difficult if I’m not at my best and he’s having a less good day too. However, I think that there can be much in common here with any relationship and you figure out the best way to go forward together in that particular moment. One day, it might be that I say to him, “I know you’re having a rough day. Can I do anything to help?” The answer might be, “No, thanks” and I may put my headphones on and let him have some time to himself. Unfortunately there will never be a definitive answer to what will be the best way to help, how much to talk etc., but it’s a case of working it out as we go along (pretty much like most of life).

Communication
I would say that communication is very important in any relationship with one partner suffering from any chronic condition. Over the years, I have worked on becoming a better listener as I can understand that being interrupted or being talked over would be tiring and unhelpful for anyone with less energy. Luckily I am a people watcher anyway and it makes it easier to pick up on how he might be doing. 
You can also ask! 
  • “Can I help with that?” He might be bringing the washing in from the garden and I will look at his expression as he’s coming in the door and ask that question if he’s frowning or just looking more tired. In the past, it’s been too easy to just instead take over (with the best of intentions) but that doesn’t give him the choice
  • “Is there anything I do regularly that helps or doesn’t help?” Again, it can be possible to act in a certain way with the best of intentions, but it may be that it doesn't have the positive effect that you were hoping for. 
Be honest and don't hide the bad stuff! I have found in the past that I didn't want to bother him with stuff that I was struggling with as he has enough going on anyway. However, this just means I'm not communicating and only wanting to be happy for him when I might not be. 

A subject that came up recently was my own energy levels. I suffer with Seasonal Affective Disorder which means that I am more tired in the winter months. Whilst this will never be to the degree that is experienced through CFS thankfully, it does affect me. However, I was finding that I was concerned about saying, "I'm tired" around my husband as it could be irritating to him on a not so good day. Answer? I asked him and the bottom line is that whilst his energy levels may be lower than mine on that day, he is still concerned about my well-being. Talk, talk and then talk some more.  

Another example - after one of our aikido classes, we eat at a local pub for convenience and often he will get out his iPod or Kindle when we sit down. I admit that I was originally irritated by this as it felt like I was being ignored. However, after watching him for a couple of weeks I understood that this was his way of relaxing after teaching and concentrating. He's then able to talk to me after that initial period of down time.    

Doing stuff together
This is an area where we need to be positive, but also realistic about what someone with CFS may be able to do. Like many other chronic conditions, there will be better times and periods of relapse. This means it will be useful to consider some lower energy activities that we can both do together. For example, we both play an online game called Guild Wars 2 and it’s something that won’t be too tiring for him. We also enjoy curling up the sofa together with the cat to watch a series on Netflix and I'm very much enjoying Gotham currently.

Learn about the condition
He has more recently been reading more on the subject. At first, I found it upsetting watching some of the videos about how badly some people’s lives are affected. However, I would say that overall both of us learning more has been of benefit. It’s helped encourage us to talk about the difficult stuff and that’s much better than avoiding it.

It might make or break your relationship
It can be too easy to think about the negatives, but I believe that we have a stronger bond due to the CFS. We communicate better, are closer and coping with any of the difficulties are worth it to have him in my life. Luckily many marriages may not be tested by the ‘in sickness’ part of the traditional vows, but I believe you become stronger together or the sad alternative is that you go separate ways. Even if you love someone, I don’t think that everyone is cut out to have a long term relationship with someone with a chronic condition. I’m not saying that to judge or to say I’m wonderful, I just think it’s a realistic fact and it means that it might be better to kindly express this and walk away.

Look after yourself
Luckily, my hubby has mild to moderate CFS so I am not his carer, which may be the case for some partners. It is important to have time to yourself and I’ve found it also helpful to spend time with people who do not have CFS. It took me a while to figure this part out as I enjoy my husband’s company and we share interests, but I think this is also important in any relationship anyway. 

For example, on a weekend day where he might have less energy we will spend time together, but I may pop into town for a wander and a coffee whilst he has a rest in the afternoon. Looking after yourself is just as important as looking out for your partner, as you don't want to end up doing too much and consequently becoming ill or feeling resentful (back to communication again unsurprisingly). Another example - for some time now I have agreed to do the washing up each day. It's quite a minor task, but it means he doesn't have to do it. Some times I don't feel like doing it, especially if I'm not at my best or if I have cooked dinner. Therefore, I make sure that it gets done each day and I listen to a podcast whilst doing it. It's interesting how my change in attitude and deciding to listen to something at the same time has affected my feelings about it.  

I think I am naturally an empath and can be affected easily by other's moods. Therefore, something I have been working on recently is to ensure that I don't mirror my husband's behaviour too much. There will be days when he is quieter and I don't want to be stomping around like a small child, but I need to be careful that I am still 'me'. 

What can you do to help your loved one with CFS?
  • Be patient and listen to them
  • Offer to help, but don't just take over
  • Be yourself
  • Love them and support them
  • Talk to them. 
Hang on a minute, that sounds like general good advice for any relationship! I think that any chronic condition will add some extra challenges, but if you love and respect them you work together to have the best life that you can. 

Well, that's my thoughts on the subject. I'm no expert on CFS or relationships, but I love my husband with all my heart and feel we're working well together to continue our happy life.

6 comments:

  1. Sorry to hear about this Anita, but you are a great person to support him and to help him cope with this. I know it can't be easy for you.
    Reading through the NHS site there doesn't appear to be any direct treatment for this yet over 250,000 people can be suffering from it.
    Let us all hope that there are some long term cures discovered in the near future.

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    1. Thank you for your kind words, Steve, & it was lovely to see you yesterday (as always).

      It's taken quite some time to be taken more seriously as an illness (instead of just being Yuppie flu etc.), so hopefully further research & funding will be invested as it can greatly affect someone's quality of life.

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  2. Anita thank you so much for this searingly honest post. I really loved every word. My darling husband has bipolar disorder, panic and anxiety disorder. He thankfully holds down a fairly stressful full time job. All you have written here really resonates. I hate the way chronic illness robs a couple of what some couples take for granted! However I love him so much it gets me through the tougher times. Thanks again Anita, I love your blog! xx

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    1. Thank you so much for your kind feedback & I'm glad that I wrote the post. I'm sorry to hear that you guys have your challenges too, but I agree that the love is what helps keep it together. Thank you & I promise I will be blogging more regularly xx

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  3. Thank you for your thought provoking post, it is good to see what it is like from the perspective of a partner of someone with a serious condition.
    I have Fibromyalgia which has a lot in common with CFS, and my husband has been wonderfully supportive throughout the diagnosis and since then. This reminds me to sit and talk more, because I know he has stresses that he does not raise because he does not want to worry me. Thank you for reminding me to talk with him about things from his perspective too.

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    1. You're very welcome & thank you for your comment. I'm sorry to hear about the Fibromyalgia & it does sound like there is much similarity between the two conditions. I am very glad to hear that your husband has been supportive & wishing you all the best.

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