Spoonie Caregiver – Simon

This week I’m interviewing another spoonie caregiver. Simon lives in Cheshire in the Northwest of the UK, he’s 45, works as an IT Manager, for a Global blue-chip company. He is also a qualified hypnotherapist, NLP practitioner and Time Line Therapist.

How did you and your partner meet? And was she ill at the time?
We met in 2001, via an online dating site; she was healthy at the time. We were married in 2003.

What is your partner’s diagnosis?
She has yet to be fully diagnosed to our satisfaction; however, she is being treated for Fibromyalgia.

What was your initial impression of their illness? 
My initial impression was that this was not an illness at all, but the result of an accident, in which she suffered whiplash-like symptoms. I, therefore, assumed that although it was not pleasant, and there was considerable pain and discomfort, it would be treatable and would pass. Of course, as time went on and tests were conducted, that was obviously not going to be the case.

How has their illness affected your relationship?
At times it can put be a strain, usually due to the fact that Ali is a very independent person who does not like relying on other people, and I am the type of person that can be caring to the point of being overbearing. As you can imagine, there can be a clash of wills!

I think there are also times when both of us can feel very down or frustrated because of the situation we now finds ourselves in. Ali gets frustrated because she is almost always a positive, happy person, and the times when her body just won’t do what it should can get to her. For my part, I hate to see the person I love in pain, with no way of helping and that gets me down. All these types things affect a relationship in general – not least the unspoken, “why me, it’s not fair”, and can mean that we are both trying too hard not to upset the other person by showing the frustration we feel. Sometimes we need to accept that it’s not a problem to be fed up, or to not do what we had planned.

 Have you ever considered walking away because of the illness?
Never. The thought has never entered my head – not even to dismiss it.

What is the thing about your partner’s illness that most frustrates you?
Not being in a position to help make her better, and not being able to ease the pain.

[Tweet “It frustrates me to not be able to ease my #spoonie wife’s pain via @sibex”]

What do you do to try to make your partner’s life easier?
I work from home as much as possible to ensure that when she does need to just sleep or take a break, I am here to look after the kids, do the school run etc.

I also try and use hypnotherapy to help with the discomfort. I hope the most important thing that I do is make sure that she always knows that I am here to support her in any way I can, and anyway she needs.

[Tweet “I try to make sure my wife knows that I’m always there to support her. #spoonie caregiver @sibex”]

What one piece of advice would you give to someone whose partner was dealing with chronic illness?
I’m going to have to give you two.

First, quite simply, Just Be There.

Second, understand that at times, no matter how much you empathise or sympathise, your partner will get frustrated and annoyed because you can never truly appreciate what they are going through. Accept this, and do not take it to heart. You are the one person they can rely on and feel comfortable enough to share their frustrations and pain with, so don’t break that trust by getting annoyed just because you think they are taking it all out on you. They may well be taking it all out on you at that particular time, but they have probably earned that right – and so have you – because it means they know, you are their true support.

Is there anything else you want to make sure you share?
Only that, if I’ve learned anything from watching Ali suffer, it is that she is a truly inspirational person who has not let the condition she is suffering with rule the way she lives her life. This attitude, I believe, has done more to fight the illness than anything medical science has so far tried to throw at her. For her, positivity is the key, and that is something that is no small feat.

[Tweet “I believe my wife’s positive attitude has done more to fight her illness than any treatment. via @sibex”]