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 . 

What speaking out has done for me.

Many people are terrified to speak out about suffering from mental illness .
I was one of these.

For many years my life was tough and 90% of it was down to me.
I wasn’t willing to accept my illness.

I hid it the best that I could when I was out of the house.
People just saw me as a timid child, but my home life was hell.
Constant arguing and fighting over stupid things. I couldn’t control my anger.
I wasn’t angry at my family, I was angry at myself, but I would blame them as it was easier.

Hiding anxiety is tough and when you lash out, you normally lash out at those closest to you.
My parents just thought I was a naughty child, but there was so much more to it, I just couldn’t tell them.

Eventually, I went to see a doctor when I was 16. I was diagnosed with depression at aged 6 but they put it down to school and being a “school phobic”.
I was a phobic of most things, anything that included people and strangers.
I spoke to the doctor and they advised me that I should take medication. They gave me leaflets and told me to speak about how I was feeling and to keep diaries to help me speak about it.
I did the diary part, but I never spoke out about it.
I refused medication for as long as I could. I did speak to my parents about my anxieties but very vaguely.

I went through a lot in my short life, counselling being a main thing in my life. I hated it. Strangers wanting to know everything about me and asking me why I was feeling this way etc etc. It’s not my cup of tea.

I gave in to medications at the age of 24. It made me spiral backwards and I was at an all time low. The doctors kept changing them often. I was getting worse and worse.
I managed, after a year and a half, to pull myself off them .

Eventually, when I was 25. I started CBT.
CBT changed my life.
I spoke to my family and loved ones about my illness. I opened up completely.
It lifted a massive weight.

CBT only lasts 8 weeks. One session , one hour a week, but it made a HUGE difference to me.
Alun helped me focus on the here and now. He made me realise I wasn’t weird or an outcast. I accepted my illness and I managed to help others accept meΒ to.
He helped me make this blog page which in turn has helped a few other people cope with their mental illness. I have also made new friends through this and I don’t feel lost anymore.

Speaking out has helped me:

  • Stopped the arguments.
  • Made others understand that I’m not cutting them out, my anxieties restrict me.
  • Made new friends.
  • Helped others speak out.
  • See my friends more now.
  • Made a blog.
  • Taken a lot of weight off my shoulders.
  • Got people off my back about working again.
  • I’ve spoken about all of my physical illnesses, as speaking out about my mental illness has given me the confidence to be open.
  • Made me feel more “normal”.
  • I have accepted myself and the hand I have been dealt.

As terrifying as it is to think about, it really isn’t anything like that. Thinking about it is the worst part.
Once you know you’re ready to accept yourself, speaking is part of the healing process.
I’m no where near “cured”, but I am getting there. I am slowly taking steps in the right direction, and as long as this road may be, I know I can get through it.
Day by day, little by little.

I highly recommend speaking out to everyone.
The best people to start with are the ones closest to you. Eg. Mother, Father, Brother, Sister, etc.

You’ll be surprised by how many people understand.

Being selfish.

This year I decided to do what I wanted to do .
Last year , as you know,  I went through hell and back with family and loved ones . We lost a lot and we’re left a mess .
I totally gave up .
But this year I’ve decided to be selfish .
I never put myself first and have always felt guilty for when I used to treat myself and not my friends or family .
Why should I ?
I deserve to be happy too !!
Last year proved that life is way too short to just sit back and hope and wish .
So this year , I have decided :

🌹 To eat clean and healthy .

Myself and my partner want to lose weight .
So far , so good .
All our food is clean and fresh πŸ™‚
Low fat and barely any carbs .
No sweets but we do have fruit and hot chocolate to help with the cravings .

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🌹 Get my eyebrows tattooed .

I have shaved / plucked my eyebrows since age 18 . So I have zero as I hate my natural brows .
So I decided to get them tattooed on . Semi permanent make up .
They last up to 5 years if you keep topping them up every so often πŸ™‚
Best decision I ever made !!

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🌹 Get more of my tattoo finished.

I started my sleeve tattoo last year . But as I had a lot going on , I ended up spending all of my savings on trying to save my dogs life (I regret nothing) .
So this year I have booked in for more work .
I have been put on the list for if a slot comes up . As William (tattooist) is fully booked for the year πŸ™‚

🌹 Seeing friends more .

I rarely ever get out .
I go to Rob’s gigs but I’m always on my own , out the way somewhere  (I can’t do crowds)
So this year I am making time for those important people πŸ™‚
This Saturday I have a few friends coming over for tea and some naughty cake (Home made – I’ll have a small piece)
Then in May I will be in London for The Damned and the day after I will be going to visit 2 amazing friends . We plan to go for food somewhere nice before heading home πŸ™‚
Then in the summer they’re  coming to visit us πŸ˜€
Exciting times ahead !!

Simple little things ,  but they’re making all the difference . I feel more confident and happy about myself !!

I wish I had done this sooner πŸ™‚
I know it sounds silly , but sometimes , being selfish really is ok πŸ™‚

Slowly breaking ….

Recently I’ve felt really lost.
I’m at that point where I don’t know which way my life is going to go .

I suffer with so many problems;
πŸŽ€ Ulcerative Colitis
πŸŽ€ Anxiety
πŸŽ€ Depression
πŸŽ€Panic Attacks
πŸŽ€ Broken Disc
πŸŽ€ Migraines
πŸŽ€ Food Allergies
πŸŽ€ Anemia

Just to name a few .
The chronic pain really gets me down on top of it all.
It makes it impossible for me to get through a day.

A lot of people don’t understand this . I don’t speak about my problems enough .
I get told I should get back to work, which I would love to, but they don’t get what my life is like .

Since I was 6 years old I have suffered with depression . This made me a school phobic .
I have social anxiety too .
I hate new circumstances. 
Meeting new people genuinely terrifies me.

Then, when I was 7 I was diagnosed with Osteomyelitis
— “Inflammation of bone or bone marrow, usually due to infection.”

I needed an operation but when I went for it they couldn’t find where it had gone .
The bone was hollow though so it had been there …. 
I have always been told I need to be extra careful as it’s still somewhere in my body , but they don’t know where. 
This has made my bones very weak.
And I bruise very easily.

Then came the panic attacks around age 9 .
I would get fits of anger too through these .
I had counselling for my whole school life . I had 5 different counsellors all in all .
They did nothing for me .

I went to work at age 16 .
I worked hard but my depression and anxiety got the best of me .
I went from job to job .
I got sacked from a few because I was always ill. 
I was known to collapse / faint .
People would say it was sugar levels but it was my blood / anemia . Which we found out only a year ago .
My iron levels were so low , I could have died at any point . And that’s no exaggeration!!

Between jobs I also went to college .
I studied Performing Arts for a year and passed with the highest grade .

During this time I thought I had broken my coccyx bone . I fell in the dance studio on the wooden floor .
The doctors told me I couldn’t have broken it and blamed my anxiety for years.
Recently, found out I have broken my disc in my back .

I then went on to theatre lighting and design for 3 years which I also passed with the highest grade .
I wouldn’t have passed it if it wasn’t for my tutor though . He is an incredible man and became like my best friend .

I was off for a few months due to illness .
I thought I had bowel cancer .
I was extremely ill.
I was able to work from home thanks to my tutor , while I was having tests and biopsies .
It turned out to be Ulcerative Colitis. 
I still don’t have it under control nearly 7 years on .
Not a day goes by without a flare up . Some are super bad and others are bareable .
This doesn’t help my anemia as I’m losing blood on a daily basis ( not nice I know but this is my life ) .

So whilst a lot of people are judging me because all they see is me smiling and very very rarely see me going out …. I’m going through hell .

When someone says I need a job . I can’t just brush it off .
More than anything I want to work .

I trained for a job that I have been dreaming about for as long as I can remember. 

But it is impossible for me to hold one down .

I have tried and tried and either end up having to leave or being sacked because I have too many sick days .

I don’t just sit around every day playing games or having a laugh .

Most days I can barely walk because of the chronic pain I am in .

The disc in my spine is leaning on the major nerve, causing pain in my spine , hips and knees .
My life is pretty difficult .

I am lost .
I want a future where I can work. 
But I can’t find a path to take ?

I have zero motivation because I barely sleep .
I’m exhausted . (It’s 5am now) .
I barely eat because of the pain .
I don’t leave the house because of it and the fact I have social anxiety. 

So what can I do? 

Even going to the doctors is terrifying for me . Let alone heading out to a job .

I’m currently attempting to write a book again .
I’m also painting as and when I can .
But it takes me about 3-6 months to finish one painting .
So it’s not like I’m not trying ….

My point to this blog, is that people really need to stop judging. 

I smile a lot, I do my best and I help people as and when I can .

I don’t talk to a lot of people about my problems because I know you have your own .

I don’t like being a burden .

But when people think I’m A ok and just lazy . It really annoys me .

I have fought a battle since age 6 .
It’s not something a child should do . 21 years on , I’m still fighting .
I don’t need judgemental people on my case on top of it all .
Life’s hard enough !!

There is one bit of credit I can give myself though , and others like me .
We are bloody strong .
Because , no matter how exhausted we are , we still keep fighting πŸ™‚

A surprise attack

Whilst I sat in the comfort of my own home . With a glass of water and a plate with some food on . Unwinding from a long , busy day of sorting . Putting my feet up and watching Grim .

A loud, droaning noise came from outside.

I turned the volume down on the laptop and listened for a minute or two .
The noise I could hear appeared to be voices, male voices . Aged 17/18 . At a guess .

I then heard the front door being tried .
I knew Rob was coming back from band practice, so I thought maybe it was him . But who would be with him ?
His band mates weren’t that loud and no one else would be with him.
I couldn’t hear Rob’s voice either.

After a few more minutes (and checking the door was locked) I decided to carry on watching Grim .

No sooner had I hit the play button , there was an almighty **BANG**

Someone had hit the window. 
It frightened me . So much so , I had to call my father. 
After he checked to make sure the coast was clear , I went back into the living room and …. broke down .
My whole body began to tremble and I couldn’t stop it .
I looked at myself in the mirror and asked myself ;

“What’s wrong with me ?”

I never react this way . I am very rarely ever frightened .
But something had made me turn into this panicky mess .
I couldn’t believe it .

Through someone’s stupidity and probably thinking it was a funny idea to play ‘knock knock run’ . I had become a blubbering mess .

I managed to calm myself down by swilling my face with cold water , having a drink and a cigarette .
Once I had done this , Rob was back .
I felt safe now and managed to control my panic .
I spoke to Rob about how I felt .
It really did help .

The panic attack really had caught me off guard .
It’s never happened before .

I managed to get an early night (for the first time in over a year) and that has really helped.
I feel a lot more positive today .
It sounds stupid , but apart from that panic attack , I had a really good day yesterday .
To let that little down point take that away from me , well , that would be idiotic .

I’m not starting 2016 the way I did 2015 .
I’m starting to look for the positives rather than letting them find me πŸ™‚

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Cutting ties & moving forward.

Happy New Year everyone πŸ™‚
I hope 2016 treats you well .

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I wanted to write this blog as it’s something I’ve been thinking about for a while .
I went through a lot in 2015 . The ups and the major downs.  It was a long roller coaster ride of emotions .
But one thing that has taken a while to click with me, is the loss of friends .

We all go through life meeting new people. We all lose someone in some way shape or form , but I’m not on about the ‘normal’ loss of friends through losing contact or just life getting in the way.  I’m on about losing someone who you considered to be a friend .
The fake friend.
Someone who you put your life on hold for , to meet up with.
Someone who you threw your problems aside for and tried to help them when they were at breaking point .
(But who wouldn’t do this for you .)

And then when their life starts to pick back up, they kick you to the curb .

It feels awful .
The feeling of being used .
No one deserves that .
I don’t understand how people can put someone through it .

Oh my life is hell , they’ll understand

– When you become good enough for them. –

Now my life is back on track, I don’t need that ‘negative’ friend who has helped me through it all, I’ll just kick them to the curb and move on with my life” .

– The part where they become too good for you and you become the negative one . Because they are on the slight “up” that life has given them . –

I’ve been thinking about it a lot . As I do over think things, that’s the whole thing about anxiety .
As much as it magnifies every emotion , it can , every once in a while , make you see things clearly .

I gave my time .
I gave up hours of my days .
I would drop everything for this friend .
I would push my problems aside and I would listen to them go on and on about theirs .
They would cry,  get angry and really vent .
They needed someone and I was willing to be that someone .
To be the shoulder .
I truly believed that they wanted to be friends .
That they were a nice person .
When really , they just saw me for the soft person that I am .
For the person who will do anything to see others happy .

As soon as I had done my work . They got their life back on track , for now. They have a job again , and I feel like they now think they’re better than me. 

I had tried to make contact with this person . But there was always some excuse .
I asked them if everything was ok between us .

They lied .

I then saw them when out and about and they ignored me but acknowledged my friend .

Then in passing conversation between said friends , they dropped the news in about a job .

And it all clicked .

Whilst they think they’re being clever . They’re actually showing their true self .

I was good enough when no one else would listen to them , but the minute they get a part of their life back , boom . I’m not good enough .

They only got their idea of said job , from me . Which is what I find amusing .

I’m better than her now , because I have the job she said would be perfect for me and pointed me in the right direction

But instead of a thank you , I just get tossed aside .

The best part to it all ?

They don’t realise that with depression , it’ll always come back .

The paranoir , the sleepless nights , Panic attacks , feeling ill , feeling unwanted , unloved . Etc .
It isn’t a once in a life time thing that just goes over night . Depression is always there . It just hides until you let your guard down , and then it jumps right back on .

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2015 taught me a lot of hard lessons . The main one is having to let go .

So this blog , is me letting go .
It’s the final goodbye to a toxic relationship .
I may be unfit to work because of health issues , but that doesn’t give anyone the right to treat me like an underdog .
It doesn’t make you a better person because you can get up pain free every day . It doesn’t change who you are .
And nothing gives you the right to treat someone this way .

I know I’m not the only one who has gone through this .
So my advice to you is , cut them off .
Don’t let them get to you. 
They used you and yes it sucks .
They took your nice nature and used it to their advantage .
But that doesn’t make you a bad person , it makes them the bad person .
So instead of just dwelling on it , say your final goodbye , in what ever way you feel appropriate,  and cut all ties .

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I feel good after venting all of this πŸ™‚
Now I can move on to the next chapter of my life .
I hope you can too πŸ™‚

Nadolig / Christmas – A little downer

This year has been a horrible year for myself & family . There has been so much loss & not a lot of gain .
So to say I’ll be glad to see the end of 2015 is an understatement!

Christmas was quite a sad one for me . It’s the first Christmas without Ellie .
I found it extremely emotional & Christmas just wasn’t Christmas this year .
It’s usually my favourite day of the year ,but that was because of Ellie . I used to love spoiling her & seeing her tear open the gifts . She was so funny & cute . But this year , there was a massive void that couldn’t be filled .

So myself & my parents opened our gifts at 00:01 . Rob wouldn’t let me open mine from him until Christmas day . But I didn’t get up early , nor did it bother me that I had to wait .
I put a smile on & got on with it .

I was spoilt . I have everything I have wanted & am super thankful for it . Don’t get me wrong , I was amazed by how much I had . I’ve even managed to book my eyebrow tattoos for Feb 2016. Which I have wanted , & couldn’t afford for a while .

But the void really stuck out .
It was like a massive black hole in the centre of the room for me . Constantly reminding me how lonely I am now Ellie is at the rainbow bridge .
I don’t have my ‘baby sister’ to spoil . My best friend to tell all my secrets to (if Ellie could speak , I would have been in trouble !!)
I’m not good at talking to people , so I tend to hide my feelings & then just explode over stupid things .
But when Ellie was around , I had someone to talk to & help me take my mind off things . She kept me sane .

It’s been over 6 months & I do feel myself slipping …. Slowly , back into deeper depression .
I have asked for another dog but I’m either called silly or just told no .
It has really worn me down .

I have nothing to do except clean.
When Rob’s in work I’m on my own . He works 5 days a week & leaves for work at 7am & doesn’t get home until 5pm.
I don’t have any hobbies except collecting PokΓ©mon cards.
Most of my friends live too far away / have a family / work or are ill.
I’m very lonely on a daily basis, which really doesn’t help my depression at all .

I’ve been given some bad news over the Christmas period too .
I need an urgent back operation as I’ve broken a disc in my spine .
I’ve been in agony for 10 years .
The doctors lost my first mri & then passed it off as anxiety pains .

So , due to this my back has gotten worse .
I had to ask for another mri . The first one I couldn’t make due to illness but the 2nd app I could & did .

So now I have been refered to a neuro . Although , I had to contact rheumatology to forward my results to my gp , to be told this .
Otherwise , I would have had to wait until Feb 19th to find out from them .

So , with that worry on my mind as well  , I have no one to talk to .
I would talk to Ellie about everything & she would help . It sounds silly , I know.  But she helped me through my dark times more than anyone could .

Rob doesn’t understand why I don’t talk to him about my feelings .
It’s nothing personal , I just can’t open up to people .
I can’t speak to my parents either .
I’ve always had a dog , since I was 6 . I’m just used to relying on them . Everytime , it’s helped .

All I found over the years , with people , is that they judge me / bully or bitch about me .
I can usually brush it off , if its pointless lies etc , but if it’s something that I have told them in confidence , it breaks me . I can’t handle that . So that’s why I have such high walls when it comes to me actually speaking to someone .

I’m really sorry this blog is a bit of a downer.  I’m just struggling right now & it’s hard to see the light .
I know I will get there , I have before . I just think that occasions like Christmas , really play on the heart strings & make you realise that money really can’t buy you happiness .

I am thankful for all that I have . But I cannot wait to say goodbye to 2015 .
I’m not saying next year will be better . I honestly couldn’t care less .
But I will take it a day at a time . I’m going to focus on me . (For once) .
I’m getting my eyebrows done on Feb 1st . Then I will be booking to get more of my sleeve done , and I aim to sort my health out with my operation .

If I manage to do all 3 , I’ll be happy .

I would say I’ll get a dog too , but every time I bring it up I get shot down or shouted at . So , I won’t get my hopes up lol

Anyway , I hope my readers have had a far better Christmas than me & I hope the new year treats you well !!

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