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| Bloat with Jake and Boo in one of the first photos together in 2 years x |
Well here we are another month has zoomed by. We had been expecting warm temperatures, children squealing in the garden splashing in the pool and long leisurely walks with the promise of a nice cold beverage at the end of it. But no….we have had grey skies, wellies, jumpers and running in between the rain drops.
The school holidays are half way through. The Olympics have come and gone with a fanfare and we are on count down to the Paralympics. The national spirit is high and for once we seem as a nation should be…
Over the past two years I have spoken of illnesses, coping tools, information to get you through the day and many other things. Today I want to touch on a subject that is somewhat forgotten when it comes to a long term illness. This will be the physical and psychological impacts from the side effects of medication.
Side Stepping the Side Effects
When first given strong drugs to control a condition or illness you are just thankful that the pharmacist has something in his cupboard that will help you. A bit like the mad scientist with all his bubbling jars and potions. Furrowing around in the gloom until there is a light as he lifts the magic pills and hands over to your grateful hands.
For a time all is well in the land of medicines but like any decent story there is always a consequence when accepting something without reading the small print…yep you’ve guessed it! In that tiny writing you will find the side effects.
Most people are lucky to take medication and the only effect they have is to get better. Unfortunately there are certain drugs that have the power not only to help you but to change your entire body. As days roll into weeks you can see that you are changing but powerless to stop it. Can you side step it? No, I am afraid the simple answer is if you need the drugs then you have to put up with what they bring with them.
You an always try and minimise some of the effects by eating healthily and exercising. A lot of steroid medication can cause weight gain which can bring it’s own problems. I carry a warning to all my friends not to stand still when close to me as I may chomp on their arms as my hunger takes over.
Side Salads
Being serious for a moment, I was told that my steroid intake each day I should of expected to gain approx 4 ½ stone over a 2 month period. This was not going to happen in a month of Sundays. I was determined that I would have control over at least one part of this rather inconvenient news. So Wilma dragged me to a Slimming World group run by the lovely Lucy. I have learnt to enjoy my side salads and health foods. In fact it has infiltrated my psyche and now I am unable to revert back to my old habits for anything longer than 24 hours. It has taken time but I have lost over a stone and not gained the equivalent of a ten year old child….What I am trying to say that it is important to realise you can make a difference on certain aspects of medication side effects.
Unfortunately I am unable to stop some of my side effects. Some are funny, like when I was trying to present an idea to a colleague after having some shots…..I still say I didn’t swear or dribble J Or when my hands and feet, yep all 4, decided to cramp at the same time as I was eating a yoghurt. If you can imagine a woman throwing frantic moves around her lounge whilst redecorating both children, the dog and walls with a banana flavoured yoghurt….needless to say I also had to put up with the constant snorting all night as my motley crew kept replaying the whole situation.
But others are not at all amusing and have at times really effected my health and self esteem. The above story shows the funny side of cramps but I am now no longer able to hold cutlery or a pen for more than a few minutes or the fact I get cramp in my feet but can’t get my shoes off as they have swollen I need to employ Mr Universe to prize my once slender toes out of their vice.
If your physical appearance changes it can be difficult for those around you to understand and accept. I have changed to the point that sometimes I do not recognise myself. Only 9 months ago I had a works ID photo taken. It looks like someone else has rolled up and had their photo taken for me. I now have been diagnosed with Cushing ’s syndrome that is a direct result of the amount of steroids that I take. It effects your face, body, skin, eyes, organs and legs. My friends have christened me Bloat from the NEMO movie…me being me I laugh as this how I am but for others it can be soul destroying. Only yesterday I heard that a cousin had seen me recently and had returned home so shocked that she is still talking about my physical changes. It is important to take time out, look at yourself and consider how you actually feel. The changes will not just be physical but psychological as well. Imagine one week you look like you and then suddenly your hair, face and body image is something totally different. It can be a shock and it will take time to adjust. I am only now allowing photos to be taken of me and this is because I realised that two years of memories of the Hill’s wasn’t being captured due to the concerns of how I looked….that really wasn’t a good enough excuse not to record my children growing up alongside me. I am beautiful to them no matter what and to be honest that is good enough for me.
The thing is that it is up to you on how you deal with what is going on. Below is an extract from the website About Cushing’s. As you can see they offer very simple but effective advice. I like the fact they tell you to put yourself first, we all forget to do this…
Always put yourself first
Tips That Can Help You Minimize The Impact Of Cushing's Disease On Your Life
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Write a list of things or situations that have become upsetting since you have had Cushing's disease
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· Think of ways to limit the effect of each thing or situation in your life. Decide which of these you can learn to deal with and which should be avoided
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Think of the things that give
you pleasure and be sure to focus on them. |
· Make time in your life to enjoy these things
· Try to find ways of incorporating them into other situations
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Take action to regain a sense
of control |
· Taking care of your body leads to physical benefits and helps empower you to feel that you can do something about your situation
o Exercising or taking up a physical activity can promote weight loss and cardiovascular health, and can become a social outlet when done with a group
o Eating healthy and taking certain vitamin supplements can help prevent some complications
· Learn as much as you can about Cushing's disease to help you feel like you are in a better position to make informed decisions
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Be patient with yourself and others
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· You don't have to let Cushing's disease take over
· your life, but you have to remember that it affects
· you. Try not to get down on yourself and let others
· know when you could use an emotional boost
o Let people know how Cushing's disease affects you
o physically and emotionally so that they can better
o understand what you are going through
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This blog is called Side Stepping Side Effects with a Side Salad. You can try and manage some of them but at some point you will be trying to side step so often you will look like a crab. To be honest it is a waste of your energy and good shoe leather.
If you are on medication that is going to change your appearance you have to make a choice. Fight an endless fight and in turn end up like Don Quixote shouting at windmills or, like me, accept those who love you would never judge you by how you look and for those who do? As my favourite saying goes “kick them to the kerb”. You are worth more !!!!
Well, talking of changes I am off to prepare for Jacob’s 13th birthday. So much for side salads. Cakes, burgers, wild western restaurants and plenty of fun is on the menu, I just hope it is in grunt so he can read it. I can’t believe that my first child is going to be a teenager. Where is that beautiful baby, which screamed all day, demanded 100% of my attention and cost a fortune? Oh hold on!!! He is in front of me doing the exactly that…some things remain constant regardless of passing time.
It makes me realise how quickly time has been lost to HUVS. Our days have flown but I think that is because we value every one of them. This leads me on to my next post. It will be two years since falling ill and I will be retracing my steps, reflecting how things have changed and what “the Hills” intend to do over the next 2 years J All I know is that it will be busy, full of laughter, rewarding and better than the previous 44 years.
So until next time….enjoy what is left of the summer, scream at your countries team in the Paralympics, and seize every day…CAPE DIEM x
Sarah…
