I could write an entire book about my mum with regards to her role in my ill health, she was always there for me; a rock, a support and a barrier to the outside world. Let me clear a few things up at the outset
1. Mum did not want me to stay at home with her (as people often thought)
2. She was not mollycoddling me (that word really began to annoy me)
3. This was not a hypochondriac's outburst that she was protecting. (Don't get me started on that one).
So if we start from this point you will begin to build a picture of her.
In the very early stages we were finding out things together. It was always me and her; a kind of extended couple to the existing household of mum, dad and I, and of course, Benjie the dog. Mum knew from the word go that something was seriously wrong, this was not ‘just flu’ and she had to fight quite hard to be heard within the family because all the above three statements were beginning to fly around.
“She’ll be fine when she gets back to work”
“Have you thought about taking her to see a psychiatrist”
“Don’t do so much for her, let her do it herself”
Mum always accompanied me, as I couldn’t drive. (Of course I could drive, passed my test when I was 17 but just couldn’t drive at this time.) Dad was working, so it did end up that we two would be experiencing all the treatments and therapies, the tablets and the discussions together. I’d need her there to help me to reflect the words back to me, because I would often be so wasted by the end of a consultation that my brain would switch off and she was able to feed things back to the me and family. Quite a responsibility, I think.
She was a sponge, just like me, soaking up all the information we could find. People would often contact us and tell us about their sister/brother, wife/father/husband who were ill with ME/CFS and we would always be on the end of the phone, sharing information and passing on leads to ‘help crack the case’.
She wasn’t that particularly well herself, with high blood pressure and just recovering from a hysterectomy and having to wear a calliper - she really was stoical and got me through day by day with her sense of humour, sense of fun and sense of ridiculousness. She’d always phone me when she was out shopping, asking if I could think of anything else that we may need. It was only years later, many, in fact, that she told me she phoned whilst she was out to check if I was ok, to hear my voice and to reassure herself that I wasn’t in a coma. Now this was way before mobile phones so the good old phone in the supermarket, that has now been reserved for taxis, really did have a purpose.
The devotion from this woman was second to none; she was a true lioness when it came to protection. No one could say a bad word or anything negative about me. I see now how this may have impacted on the extended family. My sister was newly married and had her first baby just at this early stage, so mum would often leave plates of food ready in the freezer for dad and me to defrost and heat while she went to London to help with my sister, probably a good opportunity for her to get some ‘time out’. I only hope that this didn’t take away the joy of being a grandparent but from the look on her face now, twenty years on, the bond she has with her three granddaughters is a bond that no one cold break.
Mum is interwoven into the fabric of this healing journey because she accompanied me pretty much everywhere, especially in the very early years.
Relationships are paramount when you’re coping with ill health, I know this is taken as ‘yes, of course’ but whomever the main person is in your life, it’s soooooo important for the support to help you overcome what is thrown at you. Through companionship, humour, determination, I realise that mum played a huge role in believing that I could heal my body, mind and spirit which was pretty new territory then. But she supported me totally so that I could rediscover myself and become 100% healthy. Ok, it took about 7 years in total, but she was there every step of the way. Respect to my Mum and all mums out there.
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