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 . 

I had a plan.

At age 16 all I wanted to do was act . 

I adored theatre and being on stage . I had been acting for over 10 years and had lead roles in everything . 

All the way through school I was an A* student at acting and script writing .

So when I went to college , it was to no surprise that I chose Performing arts . However , whilst on the course , I realised I had a passion for another side of it . I fell in love with theatre lighting, sound and set design . 

I finished my course after a year with a distinction* (highest grade) and then decided to go back and join the theatre lighting and design course . 

I thrived . It became my way of life . 

Although I was battling with my UC . My lecturer worked around it . He was so understanding and sent work home for me on days I couldn’t make it in . Then when I went in I did the practical side . 

I passed the course again , after 2 years , with the highest grade possible . I got extra grades too because I finished the work early . So I also got a qualification in PAT testing the lights and health and safety . 

It was amazing . Exactly what I wanted to do . 

I took a little break from studying and went to work in retail until I figured out if I wanted to go on to university or straight into the theatre lighting world .

I decided university would be amazing as I could stretch out into other fields too . 

But that’s when my body started giving up on me .

I had an accident whilst doing performing arts which has lead to me having broken discs in my lower spine . I have hip and knee problems too . I had to quit Uni 3 weeks before finishing the year . I was absolutely gutted . But I couldn’t cope with the pain and no sleep . 

I thought it would be a temporary thing . That I could go back and redo the year . But my body is failing me . 

I feel lost . 

I had my whole life career planned out . I knew exactly what I wanted . I set things in motion to get it . But that one slip in the dance studio has destroyed my dreams . 

The pain is getting worse . There’s no sign of pain clinic , physio or hydro therapy . 

I’ve seen physio once in the surgery just to try and get the ball rolling but the positions they have given me just hurt . 

I’m not sleeping for more than 4 hours a night and it’s a broken sleep . 

I’m constantly worried about my future . 

Being 28 and needing a walking stick with a seat on just to go places , is not how I planned for my life to turn out . 

My only interest has ever been theatre . I don’t find any happiness in anything else . But the fast paced environment isn’t for me anymore .

I really am stuck . 

I can’t work 9-5 because I don’t sleep well , so I drop when I drop . 

I’m unreliable because of that . 

Everyday simple tasks are a challenge for me . And my memory is all kaput because of the lack of sleep and pain . I can’t be trusted to boil an egg without walking off from the stove . 

I really do wish life was different right now . If only I didn’t have that fall , I would be on the track to my dream job . But I guess life had a different idea for me . A different path ? 

I wish it was possible to see the future , because right now , I’m stuck battling with my pains and emotions and it’s not fun and games . 


I’m sorry for a depressing post . But I’ve always said I will post the pros and cons of my life . Today just so happens to be a bad one . But I know , it’s only a day ๐Ÿ™‚ 

The past 2 weeks .

A lot has happened the past 2 weeks . 

Back in December I was told I was in remission with my Ulcerative Colitis . Which was amazing news for me . Even though I was getting small fare ups , I could cope . 

After 8 years of suffering I thought I was finally getting somewhere . 

Until ….

Last week I saw a doctor at my surgery . He went through my notes . I went down about hip and knees pains . 

He told me I had nothing wrong with my spine . Even though neuro says I have broken and bulging discs . He said everyone does . He also said I have ibs but didn’t test for it . He gave me meds for that . Then asked if I take anti inflammatories . To which I said no because of my UC . He went on to say that I can now as I’m in remission . 

He then said he will give me pain killers for me knees and hips and see how we go . 

That was last Tuesday . 

Five days later I was in extreme pain . When I read up about the meds , I found they were NSAIDS (Non steroid anti inflammatory drugs) . 

I stopped them immediately and prayed the pain would go away . 

Come Monday I was rushed to A&E . In pain and bleeding , a lot . 

Turns out I was right . I am not allowed these meds and the doctor in no way should have prescribed them . Even when in remission . UC is a life long condition . It never goes away , just lies dormant for a while . 

Now I have been referred back to gastro . Awaiting further tests to see what damage it has caused . 

Speaking with a doctor in A&E she confirmed that it can progress into Crohns in circumstances like mine . The worst case scenario is also bowel cancer depending how bad everything is . It’s doubtful but can’t be ruled out until I see gastro . 

However , this means my anxiety is at an all time high again . Panic attacks are back due to stress . All because a doctor didn’t do his job right . 

I am fuming to say the least . 

I feel like it’s one step forward and twenty back . 

I have really been struggling with all of this . Mentally and physically . 

Thankfully I have my family to help me through it . Without them I wouldn’t be able to cope . 

They have all been my rocks ๐Ÿ’œ๐Ÿ’œ

Family is definitely everything in times like these . 

They have helped me keep going and also encouraged me to take up hobbies to take my mind off it all . 

Along with raising money for Many Tears Animal Rescue , I have also decided to try out making glitter glasses ๐Ÿ™‚ 

They’re a lot of fun on my good days ๐Ÿ™‚ Although , I have quite a few now haha .

They help me relax and are super easy to make too ๐Ÿ™‚ 

My aim this year is to save more money . So making gifts is the way forward . Something personal and made with love and something that keeps my mind active and not ticking over on the bad stuff . 

I highly recommend it to anyone who loves being creative . It’s a nice pass time . Along with spending time with loved ones ๐Ÿ™‚ 


Good riddance 2016

Thank God for that . 2016 is over . 

Not that I’m expecting 2017 to be my year or anything . But last year was filled with so much death . 

It started in June 2015 with my partners Gran and then my dog . And then 2016 hit and so many famous people started dropping . Over 80 celebrity deaths . Most being my idols , especially Carrie Fisher , that one really got to me at the end of the year . 

Not to mention my friends who passed away suddenly, both aged 28 .

I normally love Christmas and am like a massive child . But this year, it didn’t seem right . 

All my Dec’s went up . Time spent with family . Music , alcohol , cake etc . But I couldn’t help but feel this massive void . 2016 felt like it left me a shell . Emotionally, I had been so up and down that I think I was exhausted come the end . 

Don’t get me wrong , I appreciate all the amazing gifts and time spent with loved ones . I was truly spoiled again this year . I am just emotionally exhausted .

That’s one thing I can say though , I have slept through the holidays . Been going to bed super late and staying in bed to catch up on sleep too . 

I didn’t celebrate 2017 . I had tea in my pajamas and sat and watched TV with Rob all night . 

One thing I can say though . I am happy 2016 is over . I am ready to move forward from all of that rubbish . It didn’t make me stronger , it beat me black and blue . But it made me thankful for the time I have been on this earth and for the time I have left . Be it a day , year or seventy years . I am thankful . 

So with that said , thank you 2016 and goodbye . Please 2017 , do not be a copy cat ! 

My world (s)

I blog a lot about what I go through but never enough about my two little furbabies who help me through it all . 

Stan .

And Oscar .

They’re both just over a year old now . 

Both busy Bee’s and keep me on my toes . I wouldn’t have it any other way . 

If you suffer with mental health you will know you have to live in the here and now , otherwise your mind goes haywire and you find you can’t cope . You are your own worst enemy at the best of times . 

Having my two fur kids has helped me majorly . 

I now have two little ones to look out for . 

I have to get up in the mornings . 

I have to go out . 

I have to stay active . 

I have more of a routine . 

When you have fur kids you HAVE to stay on top of things . They can’t feed themselves , brush themselves , go for long walks on their own etc . You have to be responsible . I can’t walk very far without taking breaks but my little ones understand this . They enjoy no matter what . So long as we are doing something , they have fun . That’s all they want . 

However , in doing so much for them , they’re doing the same in return for me . 

I don’t have time to sit around and mope anymore . I am always on the go . 

Take Stan for instance . He’s the oldest but he’s the troublemaker . Oscar can sit quiet but Stan won’t unless I’m sitting down and he can sit on my lap . I have to watch him like a hawk ! He rips carpets , digs , steals pizza off your plate , drinks your coffee if he can get to it , pinches the TV remote , chews through toys , eats stones , rummages through bins etc . The list goes on ! 

Oh and if I do need a lye in in the morning , you can guarantee he’s messed his bed up . We have gone through 3 beds in 9 months . He’s a bugger , but a loveable one ! 

They most certainly keep me going and make me laugh each and every day . They are always so happy and it rubs off on me . Yes , they’re busy and messy , yes they are pains in the bum , but they’re my babies and I wouldn’t change a thing . 

My depression has died down a lot since having them . It hasn’t completely gone , I do get some super bad days , but I can manage better with them by my side ๐Ÿ™‚ We are a trio and I love every moment ! They’re better than any anti depressant pill . The only side effect is happiness . Oh and poop …. Lots and lots of poop . They are poop machines ๐Ÿ˜‚๐Ÿ˜‚


On top of it allย 

So to top off my previous blog , my health is complete rubbish again .

I am awaiting hydrotherapy , physiotherapy and pain clinic , all whilst battling to come off these God awful drugs – Gabapentin – . I am meant to have a colonoscopy in 13 days but can’t whilst on these meds . So have to postpone yet again . 

I have been told I am anemic again . Great . So here’s the fun part . . . . 

I’m anemic , so I have been told by Doctors that if my iron drops again I need infusions . End of . No messing around with drugs or vitamins etc as my body doesn’t absorb them and I nearly died last time . 

So I go and see a Doctor . We only have locums now .

She tells me I’m under half – Her words – and that I should buy vitamins to top up . She also said that when I decide not to be vegetarian my health will improve !! Bare in mind I am vegetarian because I have been advised by doctors to be . And having UC , it’s not a good idea to eat meat !

When I bring up what all previous doctors and consultants say , she just has a go at me and tells me to buy multi vitamins .  

So I walked out of there annoyed , but got those damned vitamins . Which made me sick , caused sleepless nights and made me feel worse . 

She also told me to stop my gabapentin .  Which I did and had severe migraines , shallow breathing and multiple panic attacks . Hense why I am back on them . 

Trying to see a doctor at the moment is hell . You just can’t seem to get an appointment . I am not only battling with my health but with my surgery . It doesn’t help . I’m stressed and ill and seriously do not have the energy .  Between what I have been through , my depression and all of this on top . These are the reasons why I have avoided posting anything , blog wise . 

I have missed blogging as it helps me and I like to think it helps others to be open and speak out . It helps settle my mind when it’s in overdrive and it makes me happy . But battling all of this , my mind is a mess . I can’t seem to function properly on a normal day . I’m exhausted , forgetful , snappy and just fed up . Nothing I do seems to help . 

If anyone has any advice on how to relieve pain , sleep more – at least 8 hours instead of 2 – , relax my mind etc . I’d greatly appreciate it ! 

Thank you all for being so patient with me and supporting me . It means a lot .

Gabapentin stopped working

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As you all know I have been on Gabapentin 300mgs three times a day, for a while now.ย Well, as of 9 days ago, they stopped working.
They were a miracle drug for the short time they worked. I felt amazing. But 9 days ago I started to experience pain again, to the point I didn’t get more than 2 hours sleep a nightย for 7 days.
I contacted a doctor, explained my problems. He said to stay on them and keep the same dosage going.
I couldn’t bare it. The pain got too much again and with next to no sleep, I wasn’t eating properly.
So I took it into my own hands and upped the dose to 600mgs three times a day. Which was originally the plan anyway….

It’s helping!

I’m sleeping again, although I’m playing catch up and am still exhausted, I’m sleeping. I’m also eating somewhat normally.
It’s not the best choice, I didn’t want to do it without my doctors permission. But what can you do?

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I will be asking for other medication though. I have been warned today that I could put 3 stone on whilst being on them!!
A friend went through it and was told to get off them by their neuro.
She put on a lot of weight which made her condition worse, and as I have been told to lose weight as it is, it’s not a good choice for me either.
I need to lose 3.5 stone as it is. I can’t risk putting on 3 stone more. It will make the crushed disc worse along with my hips and knees.

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To help me lose this weight I am doing a 5k neon walk on the 22nd. It’s a massive thing for me but a friend is coming along to help me ๐Ÿ™‚
I feel good about it. I never do these things because of my anxiety, but I know it’s good to push myself from time to time.
I also know the people organising it so that helps on top ๐Ÿ™‚
– Yes, expect a blog about it!

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Sorry about the delay between posts recently.
I have been in a lot of pain as I have said (above). I haven’t been in the right mind to post anything.
But here’s a little update ๐Ÿ™‚
I will (hopefully) be posting more over the next few days though, to play catch up!