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Fibromyalgia from a Carer's Perspective

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Category: Awareness
Published on Monday, 24 March 2014 12:05
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This is not your usual post about fibromyalgia for the simple reason, I don’t have it but that doesn’t mean I’m not aware of it or that I don’t care about it, I do. The reason for this post is that my partner suffers from fibromyalgia and I would like to give you a medical definition of this illness but if truth be told I don’t have one. Yes I’ve read about it on various web sites and I’ve seen the list of symptoms but I want to tell you what I know about the illness because I see it every day. 

Fibromyalgia is painful. It causes unexplained muscle, joint and sometimes nerve pain that can be various levels of sore and is not specific to any part of the body. The pain areas are random and often change. Fibro causes fatigue and chronic fatigue, forgetfulness and sometimes anxiety and depression. I’m sure anyone with fibro could add another twenty things onto the list but I have generalised it and as my partner says, when something weird crops up, it is usually a symptom of fibro.  I also know that treatment for fibro is poor. Pain medication is awful and unhelpful and quite frankly medical professionals have no idea how to deal with it let alone treat it. Finally, fibro doesn’t go away. Living with fibromyalgia must be horrific but as I said, I do not have the illness but I do live with someone who suffers from it and I know that sometimes fibromyalgia is difficult but if you love someone you should be able to make the necessary adjustments to your own life in order to live with fibro. You should also accept fibro and accept that you cannot fix it and last of all you should be able to separate fibro from the sufferer. Fibromyalgia is part of our lives, like work and university, we get on with it and on occasions fibro will try to become us and but on these occasions we have to remind ourselves that we can have good happy lives with fibro in it.

The hardest thing about living with someone who suffers from fibromyalgia is that nothing you do will take the pain away, however, here is a list of things that might just make a fibro sufferer’s day a little bit better. These things will not stop them suffering but it may make life a little more worthwhile and easier to tolerate.
 
1. Never ever make the person feel bad that they are in pain because it is inconvenient for you, i.e. you have to cancel plans, there are chores needing done, they look fed up when you feel great. It’s not fair and it’s not their fault or choice. When it affects your day, try to adjust to it instead of adding additional stress onto the person.
2. Make sure when you get annoyed and need a breather that you are annoyed at the fibro and not at the person. It’s only normal that it will get you down at some point, after all no one wants to watch a person that they care for suffer. Regularly reassure the person that you do care for them and a little time out is just to clear your head and re adjust.
3. Help out with simple things like carrying bags from the shops, even light ones will have an effect on random muscles, if you are able then do it. Do not expect the person to be able to do as much as you (if you are in good health), having a job is tiresome so additional chores may cause an increase in pain.
4. Slow your pace down often. Fibro causes fatigue and trying to keep up to a regular pace will cause the person to burn out. Have a ‘wee’ five minutes lying on the couch together, it’s a great time to cuddle up and let the person rest while feeling loved.
5. Be patient, the person may have to walk slower as they are in pain or may become tired easily, they may get depressed or anxious and are likely to be forgetful. Help by writing things down or sending reminders. 
6. Let the person talk about their pain as often as they need to and more importantly LISTEN. Try to understand what they are going through and ask then to describe the pain in detail as you might be able to ease the pain by rubbing it or adjusting seating or lying positions. 
7. Make extra time for pampering the person, running a hot bath, blow drying their hair, getting up early to make breakfast, massaging, it won’t stop the pain but it may ease it a little.
8. Laughter is a great way to make the both of you feel good. It’s a different kind of feeling and even though it doesn’t change anything, it feels a different kind of nice.
9. If it is your partner who is suffering, show them you love them. Kisses and hugs and loving are great when you’re feeling horrible, so give them something nice that will make you both feel warm and lovely.
10. Learn about your partner and learn about fibro. The more you know the more you can openly talk about it. Accept that you are not a miracle doctor and you cannot take the pain away but you might be able to help make their day more pleasant just by being there and being supportive.
11. Plan little things, mini celebrations, short breaks, future travel etc so you both have good things to look forward to and make life worth living.
12, Accept fibro, accept that your partner has fibro and adjust to them as they cannot and should not be made to adjust to you.
 
For me personally, fibro is difficult, I don’t enjoy seeing my partner in pain every day and know there is nothing I can do to take the pain away, but I love her and will support her no matter what. Fibro is not the only factor in our relationship, we can and will accept and work around that, the main factor is that we love, understand and support each other. 
 
Taken from http://kirstywirsty.wordpress.com/2014/02/04/living-with-fibromyalgia/

 
 
 

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