Chronic Illness: It Affects The Whole Family

Stacey

When you get diagnosed with a chronic illness you start to think how is it going to affect your life. I never once thought how it was going to affect anyone else. Pretty selfish really.

When you think about it properly, it affects a lot of people around you. Your spouse, your children, your family, friends, and work colleagues.

Here’s a few examples of how my illness has affected the people closest to me:

My Husband:
When I am having a “bad day” he has to do a lot more than most parents would. He clothes, feeds, changes and carries our baby. He has to drive me around if I’m not up to it. He’ll cook tea and wash up if I don’t have the energy or I’m too dizzy to stand long enough to cook a meal.
He gets annoyed and angry that he’s having to do all the extra work while I lie around but he’s annoyed and angry at me.

He’s like that because there is nothing that can be done to make me better and back to the way I used to be. Sometimes I don’t wake up through the night when our baby cries because of the medication so he has to get up more than I do. I know he’s exhausted. But I do appreciate it even though I may seem sometimes ungrateful, I’m not. It’s just that I’m constantly tired and I always seem to be in a bad mood. I know I need to show my appreciation a bit more often.

My baby:
There have been days when he hasn’t even been changed out of his pyjarmas and we’ve lay in bed all day. Just for the fact I’d had no energy to carry him or been to dizzy to stand up. On my good days I try to get out of the house as much as I can, even if its for a small walk so he gets a bit fresh air.
I feel guilty that I can’t carry him for longer than a minute without my back and hips giving in. I can’t go out everyday with him and play on the floor and throwing him about (he loves being held up ion the air) –like his dad does.

I suppose he doesn’t know any different yet but when he grows up he’ll realise there a lot of things that other peoples mothers can do that I can’t. I just hope he understands.

My family:
I’m forever asking for lifts and favours. ”Could you call in the shop after work and drop some milk in for me”– as I can’t face walking 100 yards to the shop which would mean getting myself and the baby ready. It would take up a few spoons doing so.

I’ve recently had to ask for my mother to come to my home on her lunch break and take Bobby to the childminders as I was too ill to look after myself, never mind a baby. When my husband starts working offshore later in the year I am probably going to have to ask for even more help. Since I’ve still never managed to bath him myself, I think he’ll be going along Grandmas for a wash.

My work colleagues:
If you’ve read my previous posts you will know that I’ve been seen by Occupational Health at work and that changes to my role have been made in order for me to stay in employment. I’ve recently been told that they cannot stay in place permanently and that I could basically loose my job because of my condition making me incapable of ‘some’ duties.

Because of these changes being made for me (which has been my shifts have all been changed to days only) it has meant that one of my colleagues has been changed to all nights which is completely unfair. She to is a mother, of 3, and is spending 5 nights a week out of the house and not leaving work until after 11pm. Of course this is going to cause arguments and I know that I didn’t ask to be ill but it doesn’t stop me from feeling guilty.

If I just left my position everything would go back to normal and she would have her family/work life balance back. Some of my duties have been offloaded onto other people, i.e deliveries. I must admit I haven’t kept to this change in duties. I’ve still put cages full of stock away with asking for help. I hate asking for help. I’d rather just get on and do the job but I injure myself doing so. I know what my body is and isn’t capable of, I just tend to ignore it. I need to learn to stop being so proud.

I’d like to round up by saying, I know people with illness all suffer in some way or another but give a thought to those around you to. Living with chronic illness can affect you not just physically, but emotionally, socially, and for me if I loose my job, I will be affected financially. Obviously it is the patient that will have the physical affects but the emotional, social, and financial can be felt by those close to you.

Give them a thought once in while.

Stacey is a 25-year-old recently-married new mum. She has suffered with joint and muscle problems her whole life and only this year has been diagnosed with Joint Hypermobility Syndrome. Finally, everything that she has suffered with now makes sense and she can actually “label” her condition instead of saying to people “Oh, I’ve just got a problem with my muscles.” She blogs about her struggles as a new mum and trying to keep her full-time job whilst coping with her condition. You can follow her blog at http://savouryourspoons.blogspot.co.uk/

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