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| Summers gone by |
Well hello again
Quite a bit of time has passed since I Iast posted. So much has happened during the past few weeks that I am not sure where to start…the beginning is probably the best place.
I last posted at the beginning of May after what had been a rather hectic month. I remember that the post spoke of my need to try and keep things as normal as possible. But sometimes there is a need for others to step in, for your own good, and take over.
Many months ago I posted about a fantastic self help tool called the “Spoon Theory”. A lady called Christine Miseranino thought of it. She was explaining to a close friend how her day could change from hour to hour depending how much strength she had due to her condition, Lupus. The link to the Spoon Theory is below and well worth reading. I know that several people still use it and I always measure how many spoons I have left before making decisions.
So, back to my original train of thought; - letting others make decisions or take over the burden for a time….. it is important to accept help when needed. I have turned down friends, family, consultants and Drs. It wasn’t until “The Prof” took matters into his own hands that I realised that I needed to listen to what he was saying, give in and let him take over….
We all want to be in control of our lives but sometimes we do not recognize it spiraling out of control. Even ill, we juggle home life, work and relationships. Trying to keep all those balls in the air with healthy hands can be a challenge but when those hands hurt or are injured it can be harder. Think how much easier it would be with an extra pair of hands or two keeping those balls in the air with you….
So, what’s been going on my life? What hasn’t to be honest?
Unless you have been sleeping for the past month you will know we have had a Jubilee. This was a weekend of celebrations for me including street parties, family get togethers, Wilma’s birthday meal, and video days. It was great fun but I only just made it. Until the Friday afternoon I was stuck on a hospital bed being pumped full of drugs continuously for a week. “The Prof” had stepped in and admitted me….through default though; I still don’t how he tricked me. I had until that moment I had been in A&E at least twice a week trying to control the reactions. We came to a compromise; I would only be admitted if I could get out of the hospital in time for the celebration weekend.
There was another compromise that was a little harder to accept. The Chariot was to come into full time use when out of the house. My first challenge was work. I have been using the wheelchair for about 18 months now but not at work. So I pulled up my chin, sat my bum down and started wheeling. With a smile plastered on, I entered the building with my 4 inch high shoes and a fantastically stylish handbag. At first people were shocked and thought I had just gone into the chariot. I told them to look at the state of it to see that it had already off-roaded, it has an arm rest missing and bent feet, that’s what I call properly broken in. People tried to push me, that soon stopped and others greet me with a pat on my shoulder. It’s funny that never happened when I was standing up. It’s normally my right shoulder so I will need to get another shoulder pad to even out my jacket.. J
I have to confess that I should have relocated to the wheelchair months ago. It has made such a difference to my energy levels as well as scare everyone each time I speed down the ramps with my arms in the air rollercoaster style.
Medically I am waiting for a new treatment and enjoying being out of hospital. The Primary Care Trust are dragging their heels but it is a time of cuts and budget restrictions so we are not surprised....I look like a bull frog from all the steroids but every time Mark hugs me I feel like a princess.
The “Fam” are great. I have super dooper fit family. All have played in football matches the past two weeks. It now appears that I have two children who want to kick a ball at some poor unsuspecting goalie. Boo is the smallest in the team but boy does she like a tackle..I don’t know who she gets her feistiness from???? Roxy is flagging from the 40 something miles she is walked every week and Mark is now disappearing into the man I met over 20 years ago.
We continue to face things head on and as a family unit. There are times that we all express our frustrations but on the whole I think we are doing brilliantly. What I would say to anyone who has children and battling a condition that dramatically changes the homelife is to consider the difference in how the children react. Jake is almost 13 and recently struggled much more than Boo. He is angry and in denial which as parents is more difficult to deal with. Sometime the child who is appears to be dealing with everything is actually struggling. But then again a pre-teenage young man……. It was always going to be fun :0)
The children are starting to ramp down to the Summer holidays which bring their own challenges. Discos, trips, school nights, sports days and fayres….. That’s before they break up….then….. I’m bored, can I have, I’m bored, why can’t I, it’s raining, I’m bored……. And on it goes….and this is still 4 weeks away …..
So what have I got coming up…. I am so happy to say that I have been asked to present to a party of disabled graduates who want to enter the workplace. I really feel that by doing this I am paying forward something. I take great pride in the fact that people feel they can take some of my experiences and put it them to good use. Am also looking at my wardrobe for a girlie night out, “Peroxide and Polyester “here we come….. can’t wait!!!!
So that’s about if for this post…. If you see me in my wheels say Hi, I may be speeding past you whooping like usual but I will see your wave.
Until next time my friends
Sarah
The Spoon Theory written by Christine Miserandino. by ButYouDontLookSick.com
