The Story of a Chronic Pain Sufferer- Me

I decided that it was about time for me to share with you my life as a sufferer from chronic nerve pain. This isn’t going to be glamorous or anything to do with fashion so if that’s why your reading stop now, it’s just my story.

What do I suffer from?
I have chronic coccyx nerve pain which means that I have constant and I mean never ending pain in my coccyx (kind of the top of my bum). So I can’t sit or stand or lie on my back or lie on my front or walk for particularly long at all.

How did it happen?
Christmas of year 7 I fell over onto my coccyx or “tailbone” ice skating. I had a couple of weeks in a lot of pain and then the pain subdued to the point that I just couldn’t sit on a hard surface for too long. I assumed this was normal. Last May I went to Lourdes with some of my school on pilgrimage. We went by coach and it was 26 hours each way- not good for a child with a bum problem. And from around that time my health degenerated. Although it wasn’t the coach ride that made me ill, I think it just accelerated the process that was going to happen at some point. My physio described it as everyone’s body is like a set of scales and when they are even you are at full health. But I probably have a slight deposition to back problems (when I had my first examination the doctor thought my coccyx moved just a tad too much) so all of my life my scales have been slightly tipped. When I fell ice skating I tipped them further but as I healed I went back to almost normal. Yet when I went to Lourdes my scales started to tip again till they became more and more uneven – I was uncomfortable in lessons, and then all day at school, then sitting on the sofa at home too and then waking up in pain and going to sleep in pain- till one day they broke and I stopped being able to do anything normal, I couldn’t even dress myself. My world started to slowly crumble around me and then the deversation became more prominent, faster and faster my life fell around me until I was left with rumble that barely resembled anything I knew. I feel like when you read this you may question whether I am just a wimp and could grit my teeth and bare the pain. I did. For a long time. I thought I could deal with it and soon enough it would sort itself out. I couldn’t. I spent the first 4 1/2 days of year 11 at school sitting, standing, crouching and crying all on strong painkillers. That Saturday my back first went into spasm. My back basically went into shut down, it couldn’t deal with the pain anymore, so the muscles in my lower back went into spasm so much as to turn my back into a right angle. The doctor couldn’t believe his eyes and I was sent to hospital. On my 16th birthday I was told that I had to put my back into spasm twice a day everyday otherwise one day I’d stand up and the spasm would snap my spine. I’m now on nerve blockers that mean that this isn’t necessary anymore. But it is still what happens if I do too much. So I have to push myself more everyday just not over my absolute limit. That’s how I’ll improve (along with a lot of medical procedures that I won’t go into).

What has it meant?

Obviously all this means that I haven’t been at school for over a year now. When you’re not at school, not only do you miss so many wonderful social and educational opportunities, you feel invisible, sort of out of sight out of mind. Luckily I had my family and two wonderful friends called Will and Loz to fill me in on all of the school gossip. But not all my friends were as good and it got to the heart-breaking point where I had to tell my girlfriends that I wanted to see them more, I was really lonely. This one conversation, which everyone around me had being telling me to do for months, both made and destroyed friendships I held very close to me in one sweep. My friends Emily, Ruby and Abi all apologised and I am happy to say we are closer than ever. But my other friend, who will remain nameless, hasn’t spoken to me since- apart from awkward pleasenatries when we have bumped into each other. This still kills me I thought that my life had changed enough but no, there was one more important part of my life that was taken away from me. There are days when I feel like texting her and apologising and then I remember, I need not say sorry for my actions. I told her I wanted to see her more how could that have been a bad thing? If there’s one thing I’ve learnt is that when times get tough some people surprise you and some really surprise you.

But it’s not all physical. I have become petrified of people as, as my skin is also so sensitive now, if someone only brushes past me it causes me pain. Consequently going out has become scary especially by myself. That is what my occupational therapist helps me with. I have to try to go out by myself for tiny amounts, increasing this time by equally tiny increments when I feel comfortable to do so. However even then I hate it if I ever see someone I know especially people from school whilst I’m out because I assume that they must question why I’m able to be out by myself yet not be at school. They simply don’t understand my recovery and that upsets me.

What not to say to a seriously ill person-
I feel like this has been a very self-absorbed post so I thought that I would throw in this great (and kind of funny) video of examples of what people say to ill people:

But it doesn’t include one of my favourites:
‘ I know exactly how you feel’
‘Really you do that’s amazing that you’ve been through the same things as me and I never noticed. It’s so great because it’s really lonely having no one know exactly what I going through. Wow.’

The Guardian has a really good article about 10 things not to say to someone when they’re ill too.

How am I dealing with it?
At the moment I am spending my days tackling A levels at home with tutors from the hospital, being as sociable one can be from one’s living room, writing this blog which helps so much and fighting my body. I will not let it ruin me. Don’t let anything however big or small ruin you.

H

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14 things about me and my chronic illness

A little while back I wrote the post “50 things you don’t know about me” but barely mentioned perhaps the biggest thing in my life, my chronic illness, so I thought that it was about time that I did a more specialised version…

1. The illness I suffer from is a complicated business because it’s such a jigsaw of so many different things but essentially I suffer from debilitating chronic pain, the majority of which is in my coccyx (or tailbone).

2. I’ve experienced symptoms since June 2011- so quite a while!

3. The biggest thing that I’ve learnt is never to say no to something just because it scares you, you don’t know when you may regret it, so say yes to every opportunity that comes your way!

4. The most frustrating thing about being ill is not being able to do the simple things, like bend down to pick something up, the things you don’t even clock doing when well. I often wish I could be like Matilda and pick things up with my eyes- although that may be too much to ask.

5. The thing I miss the most is being around my friends and family in a normal teenage way- it’s very peculiar to only really see people from your living room.

6. Living with a chronic illness is very difficult to understand, and unless you’ve suffered one I would probably be annoyed if you tried to say you ‘know exactly how it feels’, but the best way I’ve found of explaining it is with the spoon theory which you can read on Christine Miserandino’s blog Butyoudon’tlooksick.

7. The hardest question to be asked is– how are you? This may seem a strange thing to say but for me it’s such a hard question because a lot of the time I don’t know the answer myself which is why in response you’ll probably get a “fine” or “alright”. An easier one for me is “What kind of day are you having?” then I can give an answer about what I’ve done in the day.

8. The things I couldn’t live without are my hot water bottle which has put in a lot of good service and my, fondly named coccyx cushion, Aaron. But truly I couldn’t live without my mum, she’s wonderful!

9. The biggest adjustment I had to make was listening to my body and learning that gritting your teeth and bearing it isn’t always possible.

10. Most people assume that I’m the same everyday but this isn’t the case. In fact my condition is incredibly changeable, I can be much worse on an afternoon than I have been that morning.

11. Regarding school work I try. I do a little everyday lying on my side- it helps keep me sane.

12. A new thing that I’ve taken up since being ill is this little blog, in a funny way it’s my illness that’s given me the confidence just to give it a go. And I’m very glad I did.

13. My favourite motto is ‘A diamond is just a piece of coal that has handled stress extremely well’ cheesy but true!

14. I love it when someone just sends me a little text, the smallest thing can brighten my day.

Other similar posts:
~ “30 Things About My Invisible Illness You May Not Know” by But You Don’t Look Sick
~ “A letter to people without chronic pain” –
by Cherokee Billie’s Blog

H

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6 Ways to be More Mindful

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This is perhaps a different post to my norm but it is about something I feel really passionate about so I hope you enjoy.

Being mindful and mindfulness in general seems to be very of the moment but actually practicing it is perhaps a different story. We live a lot of the time on autopilot so much so that sometimes it can get to 9 o’clock, we can be at work or school and have no clue how we got there. Mindfulness is all about taking the time to step back and notice what is going on around and inside of us. It helps me a lot. When my chronic pain increases in intensity, for example during a back spasm, it allows me to get a little space between what is going on in my thoughts, body and all around me, but generally I also believe that it helps me appreciate the beauty of day to day life. Here are my tips to everyday mindfulness…

1. When in the shower, stop for a second, close your eyes and feel the drops of trickle down your body.

2. When you eat your dinner, or perhaps a mouthful of that well deserved chocolate, savour it- think about the taste, texture even temperature.

3. When apply your makeup notice how applying the cool foundation feels with your fingers, the softness of your blusher brush, how the lipstick feels sliding onto your lips etc

4. On your route to work/school look up at the sky, feel the sun- or more likely in good old Blighty, the wind- on your face, take time as it were to smell the roses (metaphorically or in reality if at all possible)

5. At your desk, take three deep breaths, then try and notice five things you can hear, see and touch and five body sensations you are experiencing- I find this one the perfect way to de stress.

6. Take a moment to stretch in a quite space, taking note on how it makes your body feel, where is the tension in your body which you can focus on and breathe into

These aren’t meant to last a long time, 30 seconds can sometimes be all it takes. Of course if you want to spend a bit longer doing it, by all means do so!

H

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Picture source

Friday Favourites

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Peplum Cardigan
There’s little I love more than a good knit- it’s just so pretty!

Culottes
These culottes make me feel all 2007 when my culottes were my prize possession. Although I think I’d give the bright pink gloves a miss this time around…

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DKNY Handbag
Who doesn’t need a little splash of colour in these wintery months?

Max Factor CC Stick/ Maybelline Eraser Eye Concealer
I’ve felt recently that my under eye circles have been particularly bad but to be honest for the last few years I’ve consistently struggled with dark, mainly blue and purple, under eyes- what can I say chronic pain is hardly becoming. So I thought I’d invest in a couple of products to see if I could sort things out and I went for these little beauties. The Max Factor CC stick is yellow which claims to counteract the colour of under eye circles and the Maybelline concealer was certainly due to the Essie Button effect. I’ve only been using both of these for a couple of days but I’m liking them a lot. I think my peepers are looking brighter so I for one am a happy bunny.

Spiral (ou Engrenages si vous l’appelez par son nom réel) on BBC 4
My favourite new programme, so much so that I am watching season 5 (which is on BBC 4 at the moment) and season 1 to catch up at the same time. If you love a good crime/detective story then you’ll love this little Parisian number.

H

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50 things you didn’t know about me…

I thought that this ’50 things about me’ tag seemed something fun to do and to make it a tad more special I’ve added in some photos.

1. I have had a blood blister on my arm for about 3 years
2. I have a physiologist because of the effect that my illness has had on my life- I have chronic coccyx nerve pain
3. I am pro at kneading bread
4. I did my GCSEs at home and am now studying my AS levels with tutors from the hospital and by myself
5. I love stationary
6. My favourite perfumes are Coco Mademoiselle and Cholé
7. I love Made in Chelsea, 90210, Gossip Girl and Come Dine With Me
8. I have a scar under my chin from falling over as a child whilst wearing plastic heels- addicted even as a child
9. I really dislike having nail varnish on my fingernails
10. I have OCD tendencies
11. My most worn wardrobe piece is my Gap blue and white striped t-shirt ( I love it so much I have two that are exactly the same)
12. My favourite book is The Tipping Point by Malcolm Gladwell

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Me and my brothers- I loved that t-shirt/ when my little cousin was born/ at the Yorvik centre/ me and my brothers looking super cool!

13. I love films especially Atonement, Charlie and the Chocolate Factory, The Inbetweeners and Breakfast at Tiffany’s
14. I love to make moodboards- it’s kind of my thing
15. I cry a lot
16. My coccyx cushion, which I use to help me sit down, is called Aarron
17. I have two younger brothers
18. I can’t believe I turn this age this year!
19. I’ve never been really drunk
20. I believe fully that if you smile the world seems a better place
21. I have very sensitive skin on my hands
22. People say I run poshly but how I manage such a thing is beyond me
23. One of the biggest fears that I’ve had for as long as I can remember is getting locked in shops so I don’t go into them if it’s too close to closing time
24. I started my blog as something to do between my GCSEs and A levels then I realised I really love it

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On holiday in Palma/ my communion/ on holiday in Hastings- I loved that window seat/ as a bridesmaid

25. Cheesy pop is my not so guilty pleasure
26. My favourite one direction member changes between Harry and Louis
27. Gossip Girl’s Blair is my current fashion muse
28. I’ve watched The Inbetween’s movie over 29 times now and know all of the words- cool kid
29. I desperately want to go to New York (and of course have breakfast at tiffany’s)
30. I love stand-up comedy
31. I could watch Come Dine With Me all day in fact my uncle has been on it
32. Trebor soft mints are my weakness so I’ve given them up for lent- succeeding so far although it is only day 1
33. I am a self confessed control freak -don’t judge
34. I love spinach – no I’m not popeye
35. I’m a sukka for a French accent!
36. My dad’s nickname for me is H fat pants

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Going to an ABBA revival night- yes I was one cool kid/ In Berlin/ my lovely friend Loz who hates having photos taken so I am pretty sure this is the only one I have with him/ at a birthday party

37. I always have been and always will be a teacher’s pet
38. I find the thought that people I know read my blog strange (hi mum)
39. I love a man in a bow tie
40. My favourite pizza topping is spinach and a fried egg
41. I sleep in a Stoke City FC hoodie
42. I am always early even when I think I’m running late I still manage to get there early- I don’t know how I manage it!
43. I do physio every single day at 1:30
44. Even though I write about all of these beautiful beautiful clothes due to my illness I have a very restricted of wardrobe which only constitutes of tracksuite bottoms and leggings
45. I sing all of the time
46. I don’t have, nor do I want, any tattoos
47. My favourite actor, not not just because he is so aesthetically pleasing, is Joseph Gordon Levitt
48. I really dislike dogs
49. I own a big collection of blazers

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In Salzburg- love that place/ with my coccyx cushion Aarron/ rocking the post op look/ me and my brother summer 2011

50. It took me forever to write this list

H