Living with Polymyositis …

Living with PM…
Wow where to start, first of all telling people…. that’s hard and their reactions aren’t always as you’d think .. they either care or don’t or don’t know how to care.

I think anyone who gets sick in life gets given the gift of letting shit roll off your back and you try to not let stress in … because you cant, you don’t have the time,energy or space in your body for it. This is a daily challenge, in time I am finding it easier.

It’s like a secret club and once your in, you see the world , people and yourself in a new light … positive yes… but also awakening… you see what some people are really like and why they are in your life and that can be good and bad. So have a clear out … people, shitty jobs and shitty food.

Stress is a key factor as many of us know in causing illness, genetics and lifestyle play a part….maybe its just plain old bad luck?… whatever you believe do not let it stop you from being yourself and living your dreams… you are still alive I tell myself.

Pain is a player, I never knew how tough I was until I released daily how much pain I have passing through my body…. I still try to go to the gym, eat healthily and live a normal life because that is the beauty of life, no matter what happens you are free to make a choice to quit or carry on. Another daily challenge.

Tremors… no not the movie with Kevin Bacon but the shaking hands (twitching body) that comes with this disease, if you suffer from them as much as I do, you know tying shoelaces or doing up a button on a shirt is fucking frustrating, so fuck buttons. I’m over you and we are never, ever, ever getting back together…like ever.

Fatigue …. Oh ….it is like a leech living in my body sucking out all my energy , I take 100mg of Vitamin C and if that doesn’t work… sometimes a nap… or its game over and it’s latched on so tight you just have to wait till the feeding is over. This is caused by inflammation in the body , this is the number 1 problem of living with PM.

On the whole it changes day to day, and how you choose to see your life, that is down to how you will feel overall . If you have a negative mindset you will struggle to reap the benefits of what this life lesson (some might call it) is trying to teach you.

A positive point, you learn to love and care for you and those around you, gratitude is injected naturally into your veins ( I can’t speak for all, but this is my experience) all this shit you took for granted like walking up stairs and clubbing till 5 am seems like a dream and challenge rolled into one big glass of wine that you drink occasionally to release your realization. I have learnt alcohol doesn’t become a great factor but that’s OK … I believe a happy soul is also a happy body and sometimes you need that glass of wine….or cigarette.

I can’t express enough how important it is to love your body, it will change, you may have already lost muscle and strength… but I try to fight on as some people can recover from it…. I live with that hope and determination everyday. Watch out for energy vampires, they exist, give love and energy but I know now when enough is enough.

Talk to your family and friends, do not suffer in silence… write about it, sing about it, make a picture of it and throw darts at it … (on my to do list for the angry days) Go through the motions … The biggest one … I feel is ACCEPTANCE … when that comes fully Ill let you know.

Thanks for reading.

 

 

 

 

 

 

 

2017…. I am ready for you!

 

 

before the PM hit me…

So …a new year has started and already I am 17 days into the year , I think coming to terms with the fact this year I will turn 30 which is in itself an achievement! (hoping I make it now and not jinxed myself!)

I looked into planning ahead, but should we plan? Perhaps we will have expectations and may be let down… So I decided not to plan, just a rough list of things that I should focus on.

I’m going to continue with my blood type diet, which I have been doing for a while now.

I have noticed positive changes in my body under the circumstances, I must say it really has helped me. I have noticed a reduction in  fat deposits on my legs, my skins has become smoother and more radiant. ( I’m not usually one to give myself compliments but I just have to! ). The most positive result is having more energy and less brain fog …. I’m no longer feeling like I’m loosing my mind in supermarkets and post offices.

My new exercise regime includes less cardio and focusing on strength training for my muscles , I am still battling this daily, however it is what it is and hard work  and dedication pays off.

The right supplements play an avid
part, as they provide my body with extra nutrients that I cant absorb from food. (Anemia is a Bitch).

I also joined a walking group to feed the Homeless here in my city which happens every weekend on Saturday and Sunday nights. Last time we fed around 50 people on Christmas night and I look forward to doing it again soon. Even when times are hard there’s always someone who’s situation is harder and the basic things we take for granted (like food and water)others may not have access to.

 

Ironic …. Don’t you think ???

In December 2015 I decided to join the gym , First time in my 28 years I have ever wanted to join a gym. My aim was to build muscle and have one of those Instagram bodies , be free of Cellulite and have those LA toned arms that could bench press a small person.

I started to go 3-4 times a week and eating more protein daily , I felt amazing! I had started to see results and diet really does play a crucial part in having a toned , tight body.

However, after some sessions I started to experience excruciating pain in my thighs to the point I where I was unable to move , extreme fatigue and the feeling of just wanting to sleep whenever I could. I thought it was a little strange as everyone else who workout seem to not be complaining of similar problems. I went to the doctors and asked to have my bloods checked, I described my symptoms and He and I thought nothing of it but we did the tests anyway…

Sometimes in life we get that gut feeling or inner voice telling you something is wrong and most of the time we ignored it, after all ignorance is bliss. I carried on with my cardio and a little less weight training (I’m a petite lady , so I wasn’t working out like Thor, but I was spending a good hour at the gym.

9 months later after various tests and painful muscle biopsy , my doctors told me I have a incurable muscle disease. Irony had slapped me in the face and done press ups on my back…. Moral of my story … listen to your gut feeling!

Even though this was sad news to me and my family , the positives are that you truly find out who your real friends are. You loose muscle but gain other valuable knowledge … Like how to take care of your body , what to eat, what supplements to take and SLEEP when your tired. Sleep is my best friend and we fight sometimes over how and when because of various symptoms so my body can’t sleep, we find ways to ensure I get enough now. This adjustment has taken me a while and its still a work in progress. But I have learnt my strengths and weaknesses. I laugh at it now (perhaps I went insane after all ) Because life is too Ironic to not sit back and see the funny side , after all if you don’t laugh, your cry.