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Guest post: Being a mummy with ME

alulabelle3

I'm Alison, I'm in my (very late!) 30s and I have a debilitating chronic illness called M.E (myalgic encephalomyelitis). I am a mummy to an almost 9 year old beautiful little girl and I write a blog about it at www.beingamummywithme.blogspot.co.uk

I used to live a completely "normal" life. I had a good job as a lawyer, a busy social life and I went to the gym a few times each week. Everything changed when my friend passed away from cancer age 25 and the trauma of it affected me quite badly. I went on holiday a couple of months later and needed to take malaria tablets which made me feel awful. I was never right after that and after many trips to and back from the doctors I was diagnosed with M.E in March 2003.

M.E is a horrible condition and I have very little energy, permanent fatigue and pain as well as various other symptoms. It affects my memory and concentration, I have muscle weakness and problems sleeping to name a few. My mobility is rubbish now and I can’t walk much so need to use a wheelchair or a mobility scooter. I also suffer really bad payback from anything that I do.

After being diagnosed I didn’t really understand it and I also didn’t want to accept how much it was affecting me. I kept pushing myself to continue working until I pretty much collapsed and ended up on long term sick and then eventually the decision was made that I could no longer work.

Fast forward several horrible years of being extremely poorly and housebound and I had got to a slightly better place with my health. I had my daughter in March 2009 which brought on a huge relapse and I've never been great since. It affects things daily but I adore my girlie and wouldn't change things for the world.

It has obviously made things more difficult but I am lucky that my husband is good and we have a lot of support from family and carers. I suffer lots of mum guilt about not being able to do certain things. We spend a lot of time doing stuff together in the house and as she's got older she's like my little best friend.

About a year ago she got upset one day and out of the blue told me that it wasn't fair that we couldn't do things like her friends did with their mums. Cue major mummy guilt and having to choke back the tears. Instead of letting on how upset I was too, I suggested we came up with a plan and to think of things we could do together both in and out the house when I felt up to it.

We sat down and made a list and thought of various fun (low energy) things. Just us. Girlie time. Stuff like pottery painting, going for a hot chocolate, going out for lunch together, going to have our nails painted, having pamper sessions with facemasks, doing each other's nails, crafts (which we do a lot of anyway!), watching films & snuggling under a blanket, baking cakes. She also suggested going for a walk (Or in my case a drive in my scooter!) round the block or to the shop to buy chocolate!!

She was really happy and we decided there and then to book in for pottery painting that weekend. It was lovely and relaxed and spending quality time with her is priceless.

I am not always well enough to do things and she understands I sometimes need to stay in bed. She's lucky that her daddy takes her lots of places so she doesn't miss out in that respect. We spend a lot of time laughing.. She is hilarious and funny without trying and she is the best medicine!

We cope the best we can and as much as I wish things weren't like this, it's made me appreciate the small things so much more.

I am always up for new ideas of stuff to do so is there anything you can recommend that would be good for us both to enjoy?

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Comments

iza

Hi @alulabelle3,

Thank you for sharing your post with community members.
I am also housebound especially in cold winter days. Should write cold season which here in UK last almost all year round with some sunny days in between.
I am also mum to 7 years old boy who is active one.
I do understand that for children being housebound because of parents health condition is not very good prospective to grow up. Kids needs to socialise lots and be all around especially in early childhood.
Good you found some thinks to do together with your daughter. Enjoy it.

sue66

Thanks @alulabelle3, for sharing your story and showing us your lovely pictures too.I was diagnosed many yrs ago with M.E.and i could no longer take or meet our boys from school, luckily for me hubby was around with a car and could take over even though himself was suffering from arthritis.
Sounds like you have a good relationship with your daughter and love your approach on working out what you can do together.plus of course a very understanding and helpful husband as well. Presume youve done some research on diet and M.E. Sugar def not a good thing to consume and many have found keeping gluten and wheat out their diets does help as well as i have.
Wishing you and your family all the best for 2018
Sue

WeeAndCuddly

Hi
I'm Jane from Wishaw. North Lanarkshire. Central Scotland.
I suffer from Fibromyalgia and that's just the Start... The Label. The Condition. That's just the Start.
Muscle problems. Pain. Fatigue. Anxieity. Depression. Etc...

Being made to feel like a Hypocondriac by my family. Them getting **** off with me for being 'Lazy' when I'm tired and have no energy.

That's the problems I'm facing along with all the symptoms of Fibromyalgia.

Thanks for allowing me to vent. Xx

Diz9000

Hi,
i am Dean from Suffolk. I was diagnosed/labelled with CFS/ME/Fibromyalgia about 6 years ago. Four years ago I went through a really bad patch and all my symptoms ramped up. This was due to workplace bullying. Although I camt prove the bullying was the actual cause it pretty obvious looking back. I was signed off sick for close to a year and eventually I went through a soul destroying process , where my employer tried to have me sacked due to my not being able to fulfil portions of my contract. Luckily I had a great union rep ( from UNISON), who fought for medical retirement and after another six months of Occupational Health assessments, with my employer not agreeing with the initial assessment and asking for further assessments. Finally their occupational health provider wrote a final letter saying that my condition was not going to improve and that I would ‘never, be able work again. This was like the final nail in the coffin for me.
I had kind of accepted that my current job was no longer feasible but seeing the ‘Never’ was a real shock.
Then to add insult to injury ( as they say ) , I suffered a bilateral pulmonary embolism whilst on sick leave and was lucky to survive the weekend.

Two years on and things are under control ( or as best as I can hope for), I manage to get out once or twice a week to see friends, but then need the rest of the week to recover from one day out.
Some days I feel like a hypochondriac, until that is I try and do things around the house and end up layer up for days

sorry for the short novel