When you feel like you don’t have a life as it is, imagine how crushing it is to suffer so much pain and set backs from the little bits of life you can still enjoy.
The last two weeks have been awfully tough.
Having to cope with flare up’s, social events and a full moon has left me exhausted and my body drained. Unable to keep up and bounce back with all the events it has faced.
The above looks nothing to many of you, it used to, to me as well. Now, now I can’t hack them.
I used to swim 24 hours a week, go to school, do homework and hang out with friends. Yes, I would be tired but my body, mind and soul could cope.
It was a breeze to bounce back.
A bit of sleep on a Sunday and you were fighting fit ready for Monday a new week to do it all again.
Now, I go to a wedding for a few hours and I have to go through heightened pain, immune system being challenged and mental distress to recover. You may think, ahhh a quick sleep and you will be as right as rain.
Think again ..
Two weeks if not more.
You can judge all you like of ‘being silly’ get over yourself, ‘get a grip.’ Believe me if I could I would! You can judge but you don’t realise the emotional effect it has on me and the fact I have to cancel or miss out on plans because I am not well enough. I also unfortunately don’t have a magic wand to change my blood results.
Everything dips - all my results take a hit which again is soul destroying. You work so hard, take so many med’s and try to keep a balance.
It’s like training and training, hours and hours at every competition you PB ( personal best ) slightly more each time then suddenly you fall back by 10 seconds. Why? You have continued to work so hard. You were having an off day but why should it have such a massive effect?
It’s hard to accept.
You have let yourself and everyone else down. You have to live with that fact. You have all this emotional torment on top of trying to restore your immunity levels and maybe, maybe consider doing the fun things in life like see friends!
What has life become?
I always try to be as positive as I possibly can about my pain, disease and troubles. It’s tough. I have learnt so many amazing life traits from my suffering but also lost so much, including myself.
This week I started some strong painkillers-
The side effects are hell.
I couldn’t sit up for longer than 10 minutes without running to the toilet, feeling like I was going to be sick. I laid by the bathroom door and took my sick bowl everywhere. I was dizzy and losing my hearing. Itching I could NOT stop itching. I tried to distract myself in anyway I could but I simply couldn’t. I couldn’t breeze properly and my throat was burning.
I was ready to die.
I didn’t fear it, I just wanted relief.
Luckily after 24 hours and not taking anymore of the pain killers my symptoms subsided dramatically.
On Monday my toes felt broken walking on them, felt like walking on glass. I felt crawling all over my body and my joints felt like they were being drilled through. I couldn’t handle the bad results on top of my pain on Monday and did break down majorly. I was embarrassed I should be able to keep it together. Sometimes, sometimes it all just gets too much and I deserve to be sad and cry.
Would you be able to cope with these symptoms?
Today my Dad rang and I was struggling to get my words out, my voice hoarse and sore. I struggle to speak loud and get my words out when my throat is this way.
The emotional and physical strains of the past few days alone have zapped me and my fatigue levels are high. Despite not leaving the house since early Monday morning and being too unwell to function. ( hence lack of blogs ).
I am hoping the fatigue is my body just recovering.
I have a number of social offers for tomorrow and the weekend. However it makes it hard being unable to drive. I can’t hack full events so more than always end up declining. Despite feeling so lonely and wanting a break from the house and to see people.
***
My white cell count dropped again this week. Normal is 4.0-11.0 .
The highest mine have ever been is 3.8.
Last week, results were 3.52 and this week they were 2.6.
My neutrophils the white blood cells that fight infection went from 1.46 which was already low when normal levels are 1.8-4.0 are now 1.18. Extremely low. Maybe why the pain killers had such an awful affect.
***
Maybe living life isn’t for me?
When you don’t want to miss out on life and try to cherish every pleasure you get to enjoy but it really overshadows the moments of joy you can receive when you suffer so badly after.
The sadness when your body let’s you down and doesn’t bounce back the same.
The text messages you have to reply with ‘sorry, I can’t.’ ‘No, sorry.’ ‘I’ll have to give it a miss, sorry.’
Are heartbreaking. All this makes me cry just writing it. It’s the toughest. You reply like the above so often that people don’t ask you anymore, or forget to include you.
Nobody wants to have to come away early to take the ‘sick girl’ home because she can’t drive. Nobody wants to have to come out at night to give you a lift home. Nobody wants to be embarrassed infront of a table full of people when the restaurant gets your requirements wrong. Nobody wants to walk slowly and be left behind. Nobody wants to be pushed in a corner and made invisible, invited out of pity. Nobody my age wants to go out and sit there with a soft drink, they want to be out at events, eating meals and dancing on tables. Nobody wants to hear about hospitals and new medications.
You are too boring.
You are isolated.
To unwell to go to events and social gathering.
To risky to risk going outside due to infection.
To exhausted and drained to be focused.
To hurt, upset and emotionally torn up to motivate yourself.
To pained to want to move without tears flowing.
Somehow, somehow you have to deal with the upset above and make them work and be positive. Paint that smile on and act like the Sophie you are clinging on to.
Turn everything into positives;
I may not have seen friends but I saw family.
I may not have been out but I watched a film and caught up on emails.
I may be tired but I took the time to watch documentaries and gain knowledge.
I am pained and I used the pain in a creative way.
It’s a hellish disease in more ways than one.
We have the physicallly horrible symptoms to deal with.
The emotional strains.
The isolation to come to terms with.
The rollercoaster that is recovery to be open too.
***
I am hoping and praying that upp’ing my medications will help my results improve next week and all this fatigue is a sign my body is trying to bounce back for me.
Sometimes we have to take the heightened symptoms as a positive that my body is still alive and fighting to live.
Now let’s wipe the tears and keep strong!
The fight is far from over!
Tonight I am off to a meeting where hopefully more of my work will all come together and become something extremely positive. I need this success this week for my own sanity and motivation to prove I still do serve a purpose. Hopefully more on that to come!
This was a tasking blog to write and one that has been delayed as I have found it very difficult to come to terms with / still accepting, alongside with feeling too unwell to focus on it.
So, thank you for taking the time to read.
Love always.
S xoxo
Please share love and kindness xo