My husband and I sat down and had an honest chat on how my illnesses affect both of our lives. We thought it would be a good idea to put out there how a partner who is not ill; has had their life affected. A lot of doctors, and people in general; only deal with the ill person; (if they are lucky to have a decent doctor) and do not consider how those around them are affected. The government do not think how they are affecting people when they don’t let the chronically ill have any kind of benefits and expect those they live with (if lucky) to pay out for everything and try to keep their head above water on one wage.
What conditions does your partner have and how do they affect her?
CRPS (complex regional pain syndrome) – Nerve pain. Affects day to day life. Simplest of tasks struggle to do. Can’t do spontaneously things due to tablet routine, not sure on how will be and because of the pain. Avoid going out because of pain.
Fibromyalgia & M.E – constantly tired, don’t have a regular bedtime routine. Sometimes can last 10 hours awake, next day will only be awake for four. Very tender limbs which is difficult for many reasons. Simplest of hugs can lead to pain.
Thyroid disease – puts on weight easily, tiredness
Depression & anxiety – mood swings, laughing one minute and then becomes very down. Sometimes being alone thoughts can take control, dark issues from the past bring to a low point. Scars for days.
What did you love most about your partner when you met her?
Her smile and personality. Quiet but outgoing when she got to know me. Willing to try new things.
Has she changed in any negative ways since becoming ill and if so what are they?
For a while I didn’t get to see that smile, the spontaneous and psychical activities are pretty much non existent. She became more wary of her body changing and was unhappy with what she saw in the mirror no matter how many times I told her she is beautiful.
We don’t really plan for the future we take life day by day which I don’t mind.
Her temperament has gotten shorter, she snaps quicker at certain things.
She has given up making life goals now.
She constantly feels like a burden.
Has she changed in any positive ways since becoming ill and if so what are they?
She does not take anyone’s criticism to heart as much. She is learning to accept things more.
In my opinion she has put on weight which makes her look healthy.
She becomes more defensive for herself and others with these conditions and she is not as afraid to speak out now especially if someone belittles an illness.
What is the hardest thing to deal with?
Being the glue that holds everything together from the finances to keeping her, the house and myself together.
Also witnessing the everyday struggles is very hard to watch. She can be sorting out the dirty laundry in the bedroom and I walk in to find her sitting on the floor unable to move. Watching her go from a walk to a struggle. She used to be able to run around and now at times she can barely walk.
Do you feel in constant pressure?
Yes, I feel pressure that I have to go to work, there are no sick days; I am not allowed to be sick. I feel I have to keep myself in good health to be able to keep a roof over our head.
I feel pressure with the cooking, cleaning of the house, keeping on top of the bills and not only that but I am the driver so I always have to make sure she gets to doctors and hospital appointments. I also go to every food shop we do as one, she won’t be able to carry much at all, and secondly we are both afraid of letting her go out alone as her symptoms like arm limpness can strike at any time.
How do you feel you have changed and how have the chronic illnesses affected your outlook on life?
I thought life was going to be a lot easier than what it has become. Two people, two normal jobs, two incomes. More physical activities and spontaneous adventures, holidays, but it didn’t turn out that way. Life is like a revolving door, one problem after another problem. Its been that way for eight years (health conditions, family problems, personal problems etc.)
I feel a lot less optimistic compared to ten years ago. I feel my own mental health has been affected, which I didn’t even notice; Amanda picked up on it.
Constantly having to defend her and explain her conditions to others which they don’t understand and question all the time as if it’s made up. More straight to the point no when we have to cancel plans. I have lost my faith in the NHS and private health care it’s all about money. If they can’t diagnose someone straight away, it gets classed as a mental illness and you fall through the cracks and disappear, just another number lost in the system. The government are also like this.
What were your thoughts when she first mentioned her diagnosed with CRPS and fibromyalgia?
I thought it would be something that would heal in time and life will get back on track. I didn’t take it too seriously.
When did it hit home that this was permanent?
Once we finished seeing a private neurologist after spending over £1,000 in consultations. After that doctor telling her that she will get better, and if anything, her symptoms were getting worse, I then realised he was just taking the money and not offering a solution.
What would you say to people who see her out and about and give off the impression that she is faking being ill?
I shouldn’t have to defend my partners actions if people are that small minded that they can’t see the pain then they are not worth talking to.
Have you had any problems with family members making their own judgements about your partner and her illnesses?
A lot of my family didn’t understand what the illnesses are. When she left her first job after working there ill for a year, the first question some family asked was ‘oh but can you afford it’; ‘is she really in that much pain’. There was no care or compassion from them as in their eyes someone in their 20’s shouldn’t have them sort of conditions. Even in the presence of my family they would all still give their opinion of an illness that they didn’t understand which led to differences in opinions and family feuds. It made her feel very isolated as you lose that family support and you don’t want to open up to someone who already has preconceptions on certain illnesses.
What were your first thoughts when she mentioned CBD oil?
I didn’t understand it and didn’t know that the THC was taken out of it so I was very against the product to start off with.
Only after a few months of reading things online and her telling me the benefits did I say ‘okay try it I’ll pay for it’
What are your thoughts on CBD oil now?
I generally think it works and helps. It does not cure or fix the problem but it helps numb the pain and gives us a sense of normality for however long it lasts. I can still sense she is in pain but sometimes I can tell she has taken some because she has a smile again and is laughing more. The old Amanda starts coming back.