M-I-A

Apologies , these last few months I’ve been MIA .

A lot has happened . 

Starting off I’ve developed a food allergy again . I’m now extremely allergic to milk . Which is a bit of a pain as most foods contain milk . 

I’ve been veggie since I was 13 , so I’ve now had to go vegan . Not that I have anything against the vegan diet , it’s just difficult when you don’t know much about it and have no choice but to take it up . 

I was however a fake vegan , as I wasn’t fussy if food had egg in it . Until the last few weeks where I now also have an allergy to egg ! 

There is a plus side of this diet . As I mentioned in previous blogs , I was on all natural medications . I didn’t take the steroids my gastro gave me and researched natural alternatives instead . I was on cumin and CBD oil . 

I saw my gastro a few weeks ago and he can’t believe it . I’m in remission !! Although he was concerned about the “flare ups” . Until I mentioned my milk allergy . 

My gp has been refusing to send me for allergy tests and just said to eliminate the foods . However , as it’s so severe it can become life threatening , so my gastro has now demanded an allergy test be done . I’m still waiting for that . 

I’ve also lost 1 stone 4lbs in 3 months , without even trying to . This hasn’t happened in 8 years !! 

On top of it all , earlier this month I lost my Uncle . My Aunty found him dead in bed . He was fit and healthy as far as we all knew . Turns out all the arteries to the heart were clogged and he basically walked upstairs after having breakfast , sat down on the bed and died instantly . 

It’s been hell in all honesty . 

We are all taking it in turns to stay with my Aunty as she’s not well herself . 

We are also all still , very much in shock . 

My father more so as he was the first one there to do CPR . My Uncle was his best friend . He worked for about 20 mins before the first responders came , then took it in turns with them to keep going . He even still kept trying once the paramedics got there . So you can imagine what he must be going through 😦 

I did go to see my Uncle in the chapel of rest . First time I’ve ever seen someone like that . But it was peaceful . He looked like he was going to wake up any second , do his usual snort like he did so often in his chair , and go “Uhh I wasn’t sleeping” . If only 🖤

There is something that made us all a little happier , if you can be happy at all in this situation . Before he passed , he had the grandchildren down from London for a week . It was a trial to see if they would stay with them for a while so they could have little holidays in Wales . The grandchildren adored my Aunty and Uncle . 

Then the weekend before he passed , he had my Nieces and Nephew over for a party for my Aunty , she had recently turned 60 but they couldn’t make her original party so they held one just for them . Myself and family went too . It was fab ! My Uncle made sure they were full on good food and then spoiled them rotten , as he always did with children , cake and Ice cream with the chocolate mint wafers . YUM ! And not forgetting the crisps and pop ! 

My Uncle was a sucker when it came to kids . They seemed to bring out the child in him 🙂 He did the same for me when I was a kid too . 

So basically , we figured out , he had his goodbyes . Everything had fallen into place . It’s something we can take some comfort in . 

His funeral was a lovely send off . The church was full . People had so much to say about him , all good . My Aunty wanted to celebrate his life and that’s exactly what we did . 

The song she chose to play him out in the church was from Dirty Dancing . The Time Of My Life . 

https://youtu.be/WpmILPAcRQo

Because my Uncle loved to dance ! 

I’ll never forget him grabbing me at my engagement party and making me dance . I can’t dance at all so he put me on his feet , like you do with a child , and made me dance with him for a while . I only got up to go to the bar , and I ended up dancing at my party . But that’s the kind of man he was . He was a loving , fun , gentle man . You could always rely on him and nothing was ever too big . He’s helped me out so many times over the years , I can’t thank him enough for everything he has done . 

I’ve had a few tears , but not enough . I feel like I really need to cry and scream and blame someone . But I can’t .  I think it’s shock . Even writing this , I’m crying a bit but no where near as much as I need to . I just cannot believe I won’t be seeing him in this life again . It’s heart breaking . 

It’s safe to say , this world has lost a fantastic man , and life will never be the same again . 

I truly hate September .  Last year I lost 2 close friends and now this year my Uncle . 

These last 7 years have been hell for my family , and I’m sick and tired of life always taking from us . 

Next year , I’m 30 . I’m not sitting back waiting for something else to happen , I’m grabbing 2018 by the balls and I’m living . Because one this I have learnt the hard way is , life is cruel and it’s selfish . It takes and takes and will drain you of everything if you let it . It’s taken enough from me now , it’s my turn to take something back . 

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Chronic illness and fatigue

If you suffer with chronic illness , you’ll know that owning an alarm clock is a waste of money . You’ll hear it going off , but it doesn’t necessarily mean you’ll wake up . 

You’ll also be very familiar with the snide remarks / “jokes” people make .

“I wish I had time to take a nap” .

“Everyone gets tired , you just have to push through it” .

Having chronic illnesses almost always means you don’t have a good , if any , sleep pattern . 

The usual 8 hours sleep everyone gets seems like heaven and you always hope that one day , you will get that glorious , golden 8 hours , of uninterrupted sleep for yourself . 

The thing is , no one truly understands it until they go through it themselves . I didn’t .  I’m 28 and 11 years ago I was your ‘normal’ , every day person who could get up and go . Party all night and work all day . Get a few hours sleep and I was raring to go again ! I never understood how people could be so slow or always sleeping or never go out . I loved life and nothing could hold me back . 

Then , I had my accident and life spiralled . I then started to understand why people couldn’t do things .

Normal everyday life is a chore . 

For me , I suffer with broken discs in my lower spine , hip and knee problems . (Along with so much more) . So from the minute I get up , I’m struggling . 

Getting dressed used to take minutes , now it’s 30 minutes or more . 

Bending , hurts . 

Getting up , hurts . 

Sitting down , hurts . 

I feel like I’m stuck in a 90 year olds body . 

The struggle is real – as they say . 

By the time I get downstairs I’m ready to go back to bed .

Making coffee is a chore but it’s so needed . Caffeine is about the only thing my body runs on these days . 

My normal routine …. I say routine , it’s more than likely that I …. Get up around 11am . Dressed and downstairs by 12pm . I have coffee by 12:15pm and then I sit down . I’ll try and get stuff done but every 15 minutes I need to sit . 

Come 5:30pm I . Am . Dropping . I normally go for a nap for a minimum of an hour and a half . It takes me between 30 and 45 minutes to settle and drop off . Then I’ll be waking up every 20 – 30 minutes . It takes around 10 minutes for me to drop back off to sleep . So I never get a full rest . This is why I can’t ‘power nap’ .

Then after my nap I’m normally awake until 4/5 am . I’ll sleep until 8am , waking every 20 – 30 minutes . Then I’ll be awake for an hour (8-9am) Then I usually nod off again until 11am . Always waking every 20-30 minutes . This is if I’m lucky to get sleep . Some nights , I’m awake all night . It all depends on the pain and if I can lie down etc . 

And I know I’m not the only one who suffers like this . My father is exactly the same as me . So I know I’m not alone when I say , it really is tough . 

So to have the usual sly remarks made , it’s no surprise when people get short with you .  

When you are basically called lazy . Oh how I wish it was true . Physical and mental exhaustion is no joke . 

Or when you’re told it’s just a bad day . Or you’ll get over it …. Please , show us how ? Teach us how chronic pain can be cured with a flick of a switch . 

And when people make fun of you . Now this is where people can get really petty . When they see you struggling and just think it’s hilarious and that you’re doing it for attention . I would absolutely love to watch you walk in our shoes for just one day . 

So please , be kind people . It takes zero effort to just be nice to someone . To try and understand it . I mean , you wouldn’t like someone to make a joke about your bad day would you ? So why would you do it to others ? 

Think before you judge . 

Chronic illness is tough . I have tried a lot of medication to help me , none of which have . It can take years to find the right thing , so far for me it’s taken 10 years , and I’m still trying . 

I’m now looking into natural pain relief and foods that help .