Changes within the changes

Jake, Boo, Me, The Chariot and a couple of old birds..

Changes with in the changes

As in the song, “it’s a never ending circle, like a wheel with a wheel”…..sometimes during the time of diagnosis and successful treatment there is an interim period when the journey to health takes an unexpected detour or halts altogether. It is at these moments you feel like you starting all over again.

It could be a change in medical practitioner, drugs, treatment centre, tests or even diagnosis. All of these have the ability to send you into a downward spiral. To accept the difference in approach, it is imperative to find out the facts and how you will be impacted. At this point it is important to take time to reflect. I will admit that recently I, and this is in order, laughed, cried, appeared calm, slept and then accepted, well sort of…

Ask yourself why the new changes are necessary? Ensure clarity is achieved. Once you have taken the time to ask questions, and digest the answers the picture will be clearer and with that comes an understanding of what I call the "W W W W and H " (what, where, who, when and how). To help me process the recent changes in my treatment I was pro-active in ensuring my tests were completed and on time. I took back some of the control I had lost. Not everyone is the same but being positive and pro-active definitely helped me get through this.

I recently came across a page on the website called Disabled-world.com. The author,  Martina Roe explains the steps of coping with sudden illness or disability. She touches on subjects like,

·          who are really your friends,

·          strengths and weaknesses

·          looking after yourself

·          do not look back or forward, just look at the present

·          get rid of the stress in your life

·          setting some goals

She also draws on personal experience and stories about the challenges her family have faced.
To read more please log on to:  www.disabled-world.com/.coping-disability-illness.php

So, why am I talking of changes within the change?…..When I first entered into this unknown world I thought, like most, I would be diagnosed, treated and then cured. It doesn’t turn out that way sometimes. I have found that you have to place your trust in people you don’t know, about something as important as your health.
Those who know me will tell you that I am quite controlling and to allow someone to be responsible for my future is not easy for me. Then, to have that person change fundamental things in my treatment could have been very difficult. My father, Eric, once gave me a very good piece of advice. If I trust my physician then stop battling against him, stick with him and let him take control. It wasn’t easy but my dear old Dad was right and after time I am comfortable with the his decisions.

So, on a personal note how have the last couple of weeks been? .... I have had my ups and downs. The impact of increasing my meds meant that I was experiencing an old problem so I have had to reduce the amount I am taking and taper up again. I have was also reminded that I am not allowed to expose my skin to any of those pesky harmful sun rays, not easy at the start of the summer with two outdoors children, though I do live in the UK so avoiding the sunshine maybe easier than I think. A great excuse for big hats, even bigger sunglasses and maxi dresses. Though I think Caroline took it a little too far sending me a burka swimming suit!

My ups have included knowing that all those around me are definitely on the same page and we are all striving for the same thing. I am very lucky in the knowledge that I can always turn to those who care and ask them all manner of questions, cry, laugh or bore them silly. Recently it has been my dreams - I have been dreaming that I am fully mobile and cant understand why I need a stick, for instance two days ago my dream was that I was running up and down corridors at work then needed a stick to get to my car or like last night I swam the channel and people asked why I couldn't walk very far due to my breathing....my brain playing mind games???? or the desire to actual swim 11 miles??? Errr I think not!!!!

My downs have included a slightly dodgy hair cut with its own two tone colour, my brand new, complete garden covering, umbrella breaking in the strong winds and the fact I am facing more scans in the next couple of days, but on the whole no real biggies apart from the hair of course ;-D

So to end this post, I will just say that every day is different and you learn to adapt and roll with it. It can be difficult and I, too, unfairly take it out on those closest to me. But if you take the time to understand why there are changes then you can explain your behaviour to others. If they love you they will contiue to support you even if you are being an absolute beast with horns growing out of head.................

Until next time

Sarah x

The "Chariot of Fire " - accepting the change

As you know in my last post I was going to take the next big step and use a wheelchair to get me out and about in the "land of the living".

Well, it was a blast!!!!! The morning started off with my husband, Mark, and Caroline, my cousin, getting me into the chair and then pushing me to the centre of an empty carpark ....where they left me to fits of giggles and me realising that this could actually be fun. By laughing at our situation I was allowed to face this difficult moment, in my own time, and accept the change.

Change is the most definitely the correct word!!! People were much more considerate and gave us time to manoeuvre around the shops. I was vey concerened that people would stare. (This has been a real stumbling block for me when out using my walking stick, some people can be extremely rude which in the past has upset my children)  Much to my surprise people stared less with the chair, this was a shock, maybe the the fact I could be pushed at a normal speed helped this. The shopping trip was most enlightening and for the first time I had to consider what other disabled people have to face when entering a shopping mall. For instance; did you know that a wheelchair creates electric shocks on certain floors and I was "zapped" several times in a very popular retail store, even when using my stick to press the lift button. Thank goodness I have short hair at the moment or my "look" could have been very interesting. Space is another factor that retailers have not considered. It may have been a coincidence but it was the shops with the little accessories, that flew off of the islands like bullets, that had not left enough space for the chair to get through. This was amusing though I did get concerned for my limbs one or two times, it was after all, a first for Mark and Caroline aswell.....

To introduce my children to this new concept of transport we have named the wheelchair the "Chariot of Fire" and both the kids have been in it with me, laughing at Mark who has almost had a coronary trying to push along a windy Hove seafront.

This is not the first change in my circumstances I have had to face since falling poorly, but most definitely the one I rejected the most. Everyone deals with change in a different way, and for me it was to laugh at it. I realised it wasn't such a big deal, but in fact, it gave me so much more freedom. I have not completely given up my reticence and only consider the "Chariot" if I know I cannot make it on foot, but I now know its not the end of the world if I have to get my four wheeled steed out of the back of the car.

On a more personal note

We have a fabulous two weeks including a close friend's wedding on the Royal Wedding day. The weather held and the bride was beautiful, the groom obviously looked good too!!! Boo, my daughter, was unwell but the hospital sorted her out, she is currently waiting to be tested for HUVS as it can be hereditary, she already has Urticaria.

My appointments continue coming and frustration seems to build from a lack of understanding of HUVs. I am now up to the full meds and we find out tomorrow if I can stay on them. The jury is out for me due to reactions but I will take guidance from my Professor. He is after all the man who knows best.

I would like to thank everyone for their positive reviews of my Blog. The whole idea behind this page was to introduce and support others who have this rare condition. I am pleased to say that this has been successful and I am in conversations with people who are on similar journeys to me. Others have used the "Spoon Theory" in their own lives, it is funny to hear our conversations regarding "Spoons", and the looks we have received from passers by.

I, as ever, remain strong and positive, in my approach and will continue to do so. Hopefully it won't be too long before I am walking my big black dog, Roxy, over the Southdowns on a sunny Sunday morning.

I would love to hear your views on my page. If you have any tools that you think may help please feel free to comment.

Until next time

Sarah

PS: please let me apologise for any typos I have missed, the medication does impact my typing, actually it was always pretty shoddy!