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 me 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 🙂
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 🙂
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 🙂

🌹 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 🙂
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 🙂
Then in the summer they’re  coming to visit us 😀
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 🙂
I know it sounds silly , but sometimes , being selfish really is ok 🙂

Cutting ties & moving forward.

Happy New Year everyone 🙂
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 🙂
Now I can move on to the next chapter of my life .
I hope you can too 🙂

Busy Girl

So I have been extremely busy for the last month or so . Trying to sort a few things out 🙂 

When I can , I will share that info with you all 🙂

Health wise . I have been up and down . I have found a new way to cope with my back problems, although I don’t recommend that anyone with my issues tries it . I have been asking Rob to “pop my back”. By this I mean grab my upper body , arms included (so I’m standing straight and he’s grabbing me around my chest area) , and pick me up off the floor . My whole spine seems to pop and release the pain for a temporary time . It’s been helpful these past few weeks , but I’m not entirely sure that it’s safe . So please don’t try it !!

Panic attack wise , I have been on and off . I seem to be getting pains first this time though . My whole back , hips and legs go painful , to the point I have to take a couple of Zapain to just relieve it a bit . But it never completely goes away . I then tend to have small panic attacks for roughly 10 mins and then they go and just leave me feeling drained :/ 

It has been very strange , but I am ok . I’m here . I’m alive and I’m happy right now  🙂 Even if I am battling illness a bit more often right now . I’m trying to keep a positive and open mind 🙂

To start with I am looking into spiritual healing ! It’s an option I would like to try 🙂 On Friday I am going to a Spiritual church to look into it all and hopefully get a reading too 🙂 I will keep you all posted on that 😀 

Very busy , mentally challenging , physically exhausting .

So I have had one of the most busiest weekends this year .

I went to Porthcawl fair on Friday.
Folly Farm on Saturday.
And Band Practice with Grim Citizens, in Carmarthen on Sunday.

Porthcawl.

6pm I went to Porthcawl with Rob, my brother, sister in law, Katie & Brooklyn.
Emily had a sleep over at her friends so she didn’t come with us.
It was wet & windy but really fun!
Rob won me a teddy . I won one myself too.

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(Rob won the white one – I won the meerkat) 

Katie went on nearly every ride possible & Brooklyn just enjoyed the arcade.
We all had a laugh , had some candy floss & went for some chips afterwards.
We got soaked! But it was worth it.

I had a bit of a panic attack before going as I didn’t know what to expect. I had never been before so it was a new experience. But I enjoyed when we got there 🙂 

It helped having family around me 🙂 

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Folly Farm.

Myself & Rob organised to meet up for a catch up with friends when we were in Surrey.
As they have children we thought Folly Farm was the best bet. 
I had never seen Giraffes before either so it was a win win.

We met up with Richard & Charlotte & their 3 gorgeous boys. Logan, Corey & Zac. 
Started at around 10:30am, myself & Rob went for breakfast & a coffee as we waited for them. We then wondered around the gift shop. 
We met up with them at 12:30pm in the reptile house 😀 
It was amazing !! 
We spent the whole day walking around slowly and seeing everything . 
We had a lovely catch up & pigged out with a double ice-cream ….. Which was MASSIVE !! (So worth it !!)
I went for the mint choc chip – as usual 😛 

It didn’t rain much which was a bonus. I think we literally had 5 minutes of drizzle & that was it . 
The sun shone the rest of the time.

Afterwards, we all went into Narberth for some chips ( I know – Take away again !!) 
And went to a carpark to eat them so we could chat & have a laugh . 

It was a fantastic day & my panic attacks stayed at bay. 

I was exhausted by the time we got home (9pm) . I was so drained it was unbelievable !! 
I think my illness got to me in a different way this time . 
I slept for over 12 hours !!!! 
But it was such a nice day , it was worth it .

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Band Practice – Carmarthen.
Waking up was a struggle. I was fighting everything . I could easily have slept some more – Even though I had 12 hours sleep.
I was in agony with my back & legs & I had a migraine . 😦 It wasn’t a good start to the day.
My body was fighting me on everything . 
I went downstairs & had to make lasagne , it was the easiest thing to make in the house. I was shaking & feeling dizzy . It was horrible . 
The 2 days of adventure had hit me like a ton of bricks . 
I made sure I drunk plenty of water & I ate all of my food . (It was 1pm) 
I then had to help Rob hang his clothes out . My body hated it. I was weak & felt ill.
Eventually we made it to the car & headed off for Rob’s band practice. 
When we arrived I felt a lot better . I munched on some chocolate on the way so I had some sugar in me. 

Band practice went really well & I managed to get some nice shots of them playing 🙂 
It was a nice relaxing day for me , which I needed !! 
We went for food in Weatherspoon’s afterwards & ended up having free drinks because food was delayed . So I had a lovely caramel frappé lol (I had 2 in total) .

After food we headed home . it was 10pm by the time we got back . I was dropping again & couldn’t wait to get into bed !! 

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All in all , it was a fantastic weekend . Despite my illness pushing me back a little bit , I managed to push through it. 
I am paying for it now with all the aches & pains & tiredness , but it was so nice to actually get out. 
I miss getting out & doing things .
It made me feel “normal” . Which I have mentioned before , is a big thing for me. 

Last week , I was catching up with one of my favourite artists on YouTube. I got a little jealous as he was going out & about on his own & grabbing a coffee. The little things that I want to do basically , & it made me feel a little low . Knowing I can’t do that because of my constant battles with my illness . But this weekend made me realise that I don’t need to do that 🙂 I have very supportive friends & family who will do it with me & help me through my though times 🙂 
So even though it may be the norm for some to go & do it alone , it isn’t my norm . 
Yes , I rely on people a lot , but those people are amazing & they are great to be around .
I am very lucky.

A yoyo of emotions

Friday 28th August , myself and Rob travelled from South Wales to Surrey. 
What was meant to be a 3 and a half hour journey, turned into 7 hours.
The traffic was horrendous and there were accidents everywhere.

The Sat Nav took us through a route that wasn’t on our printed map and we both ended up panicking . It was awful ! 
But we eventually got there and checked into our hotel room.
I was so relieved to arrive ! 
We unpacked and went for food in Toby Carvery. 
The food was really nice and we ended up having a good few drinks too. It was so nice to relax.

We travelled up for a wedding. So we were nervous but excited too.
Our friends were getting married and we only knew them and one other. 

After getting an early night, we woke up at 8am. Showered and I dolled up. It took me 2 hours to curl my hair …. I don’t envy women who do this daily !
I was super bloated as my Ulcerative Colitis was playing up.
My face puffed up and my stomach made me look about 7 months pregnant .
The dress was a little snug so I was gutted and feeling like a beach ball.

Luckily, Rob had booked the taxi the night before , so we were ready in time and the taxi was right outside .
I’m so glad we decided a taxi would be best as we would never have found the place. 
There are 2 Mill Lane’s in Surrey apparently …. We found them both haha! 

The wedding was at Coltsford Mill, Mill Lane. VERY posh and so picturesque. 
It was like we were in a dream! 

When we arrived we saw the beautiful bride .
All had a hug and a laugh and then went to the bar area.
Sadly, there was no alcohol before the ceremony so we stuck to apple and orange juice.

2pm came and we headed to the ceremony room.
Once again , it was beautiful ! 

The ceremony was perfect . It was “them” . Every last detail was spot on. And the bride looked truly amazing !! 
After a few giggles through the ceremony when they said their vows and shed a tear or two of joy , we all headed out to the carpark for photos.
Sadly, the heavens opened up and it started to rain so we were delayed for a while. But this didn’t ruin anything , the photographer took control and she made the wedding photos look perfect . Even if the weather was against them , she didn’t let it win 🙂 

After some buck fizz and a chat we all headed to the front of the carpark where we all raised a few glasses and posed for photos . 
I honestly cannot wait to see them. 

After the photos it was food time.
Which once again was perfect .
There really isn’t any other way to describe it.
Everything was yummy. 

We were sat on a table with people we didn’t know.
I was very panicky and kept as close to Rob as possible.
I didn’t want to have a major panic attack in a room full of people so I tried to zone out.

However, two very lovely people introduced themselves to us, and we have become very good friends. 
I explained to them that I’m not very well and I said I may come across as awkward when I don’t meant to , but they were more than understanding .
We stayed with them all night, having a laugh . 

I was dreading meeting people because of my illnesses .
I didn’t want to talk to anyone about it , but they made me feel comfortable about it all .
They didn’t pry or judge.
They just accepted it. 

It was lovely, and a first!  

The speeches were great !
The best men trying to speak Welsh was just hilarious ! But it was a lovely touch . 

The after party went on until 11pm . 
There were free drinks flowing for a few hours thanks to the parents of the bride 😀 
I personally think they have got guts, opening a bar tab knowing there are Welsh in the room 😉 haha! 

It was perfect though , we thoroughly enjoyed ourselves . 

When we got back to the hotel around midnight , we ordered a take away as we were starving. 
Of course it had to be pizza with all the veggie toppings 😉 
And then we slept. Like babies ! 

Sadly , the next day wasn’t a good day.
I was very bloated and in a lot of pain. 

To take my mind off it, Rob decided to take me shopping .
It was a great idea and I was super excited . 

But Surrey didn’t have any good shops near to where we were staying . 
I ended up buying a biography in a charity shop for £1 and then headed back to the hotel.
Where we stayed in the room with me doped up on Zapain . 

Once again , being lazy we ordered a take away .
This time chips ! 

Rob had a fish the size of his arm and I had some beans with mine .
They were stunning !
Fatty , but stunning !

On a flare up I find only greasy foods work ok with my UC. I don’t know why , but everything else makes it all too painful . 

That night we decided we were going to travel home .
It was 10pm , we were bored and the M25 was clear at this time so we would get home in good time . 

Luckily we did , as a friend reported that the next day she had broken down on the M25 and that there were major delays . 
So we had a lucky escape ! 

Over all the weekend was amazing ! 
The shopping was disappointing but otherwise , we had fun , and made new friends 😀 

Now comes the down side . 
Travelling really takes it out of me, so as you can guess, I was exhausted .
I still am . 

I feel like I could sleep for days .
I’m also not used to eating out and my UC was already bad before leaving .
I took Pentasa , which I’m on and off at the moment as it causes more problems than good , but I thought if I took it , it would help prevent a bad flare up .

Oh boy was I wrong ! 

Along with chest pains , panic attacks and joint pain , my UC was so bad last night that I nearly ended up in hospital .
I was crying I was so scared . 

THANKFULLY , after 3 hours of drinking water and eventually getting my panic attacks under control . I managed to settle things down . 

It was terrifying and I never want that to happen again . 
I’m still having chest pains today , with a few panic attacks , but I’m controlling them for now . 
I am hoping to see a Doctor tomorrow about it all .
The chest pains are worrying me a little as it’s not just happening with panic attacks …. It’s a constant pain . 

As usual , with the anxiety , I am thinking the worst . 
Even though it is probably nothing , I keep thinking it could be cancer or a tumour …. Stupid I know ! But once again , anxiety just takes over and frightens me . 
It’s the case of , I know it isn’t , but it’s a possibility . There’s nothing there to say 100% that it’s not. But at the same time , blood tests would have picked up on it . Yet , if they weren’t looking for it , then would they have found it ? 
It’s a vicious circle , a constant yoyo and I’m feeling like I can’t win right now . 
As much as I hate losing , I think anxiety has won for today . 
But it’s ok , I will win tomorrow 😉 
I know I am stronger than my illness , I have survived 26 years and counting …. I can do it for another 26 years !
I just need to keep pushing forward 🙂 

I do have a few more blogs that I have been working on over the last few weeks . 
I shall try and post them over the next few days . 

I hope this little update is ok . I know it’s mainly a diary of my week so far and not a lot about my battle , but I am getting there with the other blogs 🙂 
I’ve just been so busy and exhausted with everything lately , that I haven’t had the chance to finish anything . But this was the easiest to write tonight , because it’s the most recent and fresh 🙂 

I hope you enjoyed it .

Remember, stay strong!

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