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| The Changing Faces of Gracie-Lou |
An unusual title I hear you say. I will explain….have you ever walked passed a mirror or window, done a double take and walked back for another look because you haven’t recognised the person in the reflection. It is only when you realise that there has been a trick of the eye. It is all ok, there looking back at you is the same person you were 30 seconds previously…..now rewind. ……you take another look and realise it is you but you don’t recognise yourself. You look different. Your face is a different shape, your thinner or fatter, you hold yourself in a different way and if you think you have changed what do others think…..
It sounds strange, why wouldn’t someone recognise their reflection but believe me it happens. I often walk past the big mirror in my lounge and need a couple of seconds to realise the stranger looking back at me is actually me.
At first I found this rather distressing then downright annoying. Where was Sarah? When did she decide to leave the building and replace her with this imposter? And why did she choose someone who had a round face and very rosy cheeks.
To add insult to injury all the ID photos for work and everyday security were taken before I changed. Constantly having to explain to security guards or officials that “yes, that is me” and “I know, don’t I look different” and “yes, I should ask for my money back”
I join in the joke and laugh, but inside I am frustrated. When I plan my wardrobe for the day my brain plays tricks on me and I visualise my attire on a thin body that is upright and in proportion. It is after a few moments I have to rethink and dress accordingly. I have always been very conscious of how I look and that still is the case.
I have given myself a “kick up the bum” checklist that I use when I feel down about the physical impacts of my condition and drug regime.
· Don’t listen to other people’s comments
· Concentrate the on the good changes
· Dress for today
· If mirrors upset you remove them from your surroundings
· Explain to friends and family how you feel
· Explain to others why you have changed
· Spend 5 minutes a day reminding yourself of the good things you have in your life
I have decided to have a “grateful board” where I stick pictures and little nik naks of special times. You know the ones, when you think about them a smile independently reaches your face. They are the snapshots in time that make the fabric of your life and you who you are. My board will have memories of who I was before HUVs and how I am now. I need to start celebrating the person I have become. Only the other day whilst whisking our way home from the hospital Mark admitted that up until 3 years ago I was a quite a selfish person, in regards to doing things out of my daily plan. I never said “no” but would indicate that it was a bit of an inconvenience. I wasn’t even aware. These days I am more tolerant, understanding and emphatic. Though Rome
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| My extremely cool plasma machine |
This week I reached another milestone which was my 100th admittance to the A&E dept in less than 12 months. Rather than face this with glum faces and concern the nurses and I had a countdown and celebrated the event in the style that only we can…Balloons made out of surgical gloves and cakes. It was a surreal evening with laughter and support in a sterile and, for others, frightening environment. So, I am back to 0 again and hope not to celebrate the 200th visit anytime soon.
In the past two weeks I have also been on the wards having plasma exchange therapy. This means that I was plugged into a rather natty machine that transported my blood into the tubes next to me, took out my plasma, replaced it with new then gave me back my blood. It was rather strange watching your life source next to you. The only side effects was that I was cold, this reminded me of the old cowboy movies where one of the heroes was shot and he would say “I’m cold”. Well, now I know why?
We are still waiting to find out whether it has made any difference but I can’t say that I didn’t enjoy having my feet up for a few days, though the sound and atmospheric effects on the ward could sometimes leave a lot to be desired.
“The Hills” are well and fully integrated into daily life. The summer term is underway accompanied by the cold temperatures, gales and rain. A typical English spring/summer. It is funny to see the trees green when snuggled under a hat or scarf. Yesterday was full of dark brooding skylines and startling bright interludes which caused us to squint in surprise. I have to admit I love the really dark clouds when they nestle on the downs by my house. It reminds me of Thomas Hardy and his skylines. Of course when the sun suddenly appears the world sparkles from the droplets of rain that have settled on cobwebs and window panes. Snuggled on the sofa watching all of this unfold I, once again, thought of my grateful board as this was a memory moment.
Going forward my world will soon be dominated by football. Both the children play and Mark has been asked to help out. Boo wants to be assistant coach which means that I can have some PJ days with my feet up on the sofa, snuggling down with my girls, Roxy and Tika, and be allowed to let the time to slip leisurely by.
We have a constant stream of birthdays, parties, meetings, days out and general get togethers. I can’t believe that Mark and I will actually be celebrating our 17th wedding anniversary. Where did that time go? Each morning I thank my lucky stars that I married Mark. He is my soul mate and though we have our bumps in the road we soon motor over them. Our marriage has been built on love, humour and the fact that we like, laugh and smile at the same things….even cars, watches and clothes. Like everything else, Mark and I face HUVs side by side, holding hands and supporting each other with the strength we muster each day. Without him I would have crumbled and fallen by now. Maybe I should say thank you more often.
So, with thoughts of sunnier days, al fresco eating and the smell of freshly cut grass we are waiting for the summer to appear, it is only a month to go before we start eating strawberries and cream whilst watching Wimbledon . As every year before 2013 we will be in our cagoules singing along with Cliff Richard, whilst the heavens open and rain thunders down on to the roof. I can’t wait………
Until next time my HUVs followers
Sarah x
