My Revision and Bad Pain Day Wardrobe

With serious revision time upon us and the fact that my pain is spiking at the moment due to me forgetting that I do actually have a chronic illness and over doing it recently I thought I would share with you what fabulous and comfy clothes I wear during these fun times.

Revision and Bad Pain Day Wardrobe

This Is What Perfection Looks Like T-Shirt £8

Mens T-shirts are always better than womens. They have room for large boobs unlike some womens T-shirts which is weird because it tends to be women that have big boobs. They are also long enough. None of this riding up or cropped business. Plus they usually have cool prints/logos on them.

Check Print Pyjama Bottoms £8

Oh pyjamas what would I do without you. I would say 50% of all clothes I wear are pyjamas. I have so many I had to empty a second draw of real clothes to accommodate them. So comfy and obviously super stylish. Also great for days when my skin is freaking out because they are nice & light and don’t touch my skin too much

Ribbed Vest Top £3

Vest tops are the majority of my top collection. I always get too hot so vest tops are great. Plus light and comfy.

Lonsdale Core Jog Mens Sweat Pants £7

I may have become obsessed with these when I stole a pair from my brother when I was ill one day and needed to go out but apparently Sonic the hedgehog pjs weren’t acceptable and these were the next best thing. They are soo comfy and great when you need to go out somewhere and have to change out of the beloved pjs. I also may have slept in them a few times when I have been too exhausted and in too much pain to change for bed.

Slub Vest Top £7

Another vest top which is light, cool and nice and long.

Navy Hudson & Rose Drawstring Shorts £9.99

I got these the other day so that I didn’t spend every day chilling in the flat in my beloved pyjama shorts. I thought this might make it look like I had actually got dressed and had my life together. They are so comfy and even though I thought they were a little pricey for casual bumming around the house shorts I love them and have worn them every day and they are now in the wash 😦

Grey & Black Stripe Trim Knee High Socks £3.99

I have a slight addiction to socks but I have an excuse. Crappy circulation from my Raynauds means my feet are always freezing hence the large collection of socks. I love knee high and over the knee at the moment and I really want these pairs.

Mr Cool T-Shirt £8

Once again baggy mens shirts are the way forward also no one can tell you aren’t wearing a bra

Athletic Works Neon Side Piped Cropped Leggings £5

Okay so these are supposed to be for exercising but they are so damn comfy I cant help but lounge around in them.

Mint Green Hudson & Rose Authentic Sweater £14.99

Massive fan of these sweaters as they aren’t as heavy as hoodies.

Front Zip Sports Bra £8

For those days when you need to wear a bra but normal bras are too painful (stupid things) sports bras are great. This one is awesome because it does up at the front so no wrestling trying to get it on and popping out shoulders.

 

I also did a post on my revision tips over on my more lifestyle blog which you can find here

 

So what’s in your super fabulous highly stylish comfy wardrobe

Beth…x

Relieving headaches and migraines

I am unfortunate enough to suffer with chronic headaches on top of all the other wonderful things wrong with my body. The Drs aren’t sure if it’s part of my EDS, a side effect of any of the many meds I take or just unrelated but I’ve had them for years and I am kind of used to having a headache these days but some times they blossom into a full blown migraine or just a really really bad headache both of which cause me to fantasise about removing my head or imagining my head explode as that’s what it feels like is going to happen.

I’ve tried painkillers but they don’t really work. Paracetamol is pretty useless now. The co-dydramol I take for my joint pain is well known for causing headaches so I try to avoid that when I have one and I can’t take ibuprofen.

This has caused me to try alternative routes minus the removing my head. I’m a big fan of lying in a dark room with a cold flannel and trying not to move too much but that’s not always practical. So here’s two things I’ve found that help.

Kool ‘n’ Soothe Gel pads £3.25

4head Stick £4.95

Treat&Ease cooling gel patch (I couldn’t find them on boots site but here’s boots own version £2.89)

Then of course there’s the usual, dark quiet room, stay hydrated and try and sleep it off.

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The Migraine Kool n soothe pads come in packs of two and are really easy to get into. The treat&ease pads come individually wrapped but the plastic wrapper is really hard to get off and resulted in a few dislocated fingers and having to use my teeth.

I always turn to these when I have a particularly bad headache as a damp cloth usually results in my pillow being wet and not solving my headache problem. These just stick to your forehead and feel heavenly however you do look like a bit of an idiot and they’re not great for being in public. My mum calls them my head sanitary towels. 

I compared the two as I wanted to see how the cheaper option measured up. Aside from the ease of getting into them I’m not sure how much difference there was. The kool n soothe pads do tend to stay on a tad longer & I did think they felt a bit cooler when on but I suppose it depends on how much you want to pay. I think I’ll probably stick to the slightly more expensive ones.

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The 4head stick is what I turn to when I don’t want to walk around with a gel pad on my forehead. I have no idea how it works but it does. It tingles a bit and feels cool and really does help with a headache. It is well worth every penny. I need to replace this one as it’s nearly empty and has started to crystallise but they last for a long time. 

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And here’s a picture of how awesome you could look with the must have headache accessory.

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What do you find helps with a headache?

Any tips?

Beth…x

Gym stuff wishlist

I do have some posts that aren’t wishlists to come up soon, I just have to get around to writing them which hopefully I’ll do over the weekend. So for now here’s the gym/lounging around stuff I want in my life.

I really need some more gym stuff but that’s not something I particularly want to spend my precious pennies on when there are so many prettier and more exciting things I could buy. However Matalan & Asda have a pretty good selection of gym stuff for pretty low prices and they are great for bad pain days and hospital appointments.

I already own the front zip sports bra and it is better than my more expensive one and so much easier for my crappy shoulders. I cant have the pull over your head sports bras because they just result in me getting stuck and dislocating shoulders which isn’t particularly fun and kind of embarrassing when you have to get your mum to help you out of said predicament. This solves all problems and is super comfy. It also gets worn when my costochondritis is flaring but I have to go out in public so need a bra.

I also already own the grey cropped leggings. So far these have only been worn to the gym once as they are so comfy I tend to wear them on bad pain days and when certain clothing irritates my skin hence the need for another pair. These are also comfier than the £24 pair of karrimor ones I bought to start with.

I really want to try the asda leggings as they look super comfy too and the Matalan shorts look great for when the weather gets warmer. I also need some more gym tops as I only have one tatty vest top that I have to keep washing.

My gym wear always doubles up for the complete opposite of its intended purpose as they are great for when I cant get away with wearing pyjamas but just don’t have the energy to get dressed in real clothes.

Gym stuff wishlist

1. Active Vest Top £8

2. Front Zip Sports Bra £8

3. Active Bubble Hem T-Shirt £8

4. Athletic Works Neon Side Piped Cropped Leggings £10

5. Active Shorts £8

6. Active Crop Leggings £10

Beth…x

Pillow Fort Magazine

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Finally getting around to writing a post about this amazing magazine. The Pillow Fort was started by Lizzy who is totally awesome. The site has all sorts of amazing things on it like a blog with lots of interesting and helpful posts, a shop with lots of products that make having a chronic illness so much easier and better and of course the magazine.

The magazine is £3 which is a really good price. For that you get a 46 page magazine with around 19 submissions from others with various chronic illnesses and the magazine comes in PDF format so you can take it with you on your phone/tablet. The Pillow Fort is all about positivity, self care and thriving with chronic illness. This is a great idea as sometimes having a chronic illness can get you down.

I haven’t quite finished reading the whole magazine yet but it is amazing and there are some really interesting articles and I have enjoyed reading every single page.

So to get your own copy…

Click here to visit The Pillow Fort.

You can also follow the Pillow Fort on twitter

Some Wheelchair Users Can Walk

As part of invisible awareness week I would like to raise awareness to wheelchair users with an invisible illness and point out some of the things we come across. I apologize if this comes across as a bit ranty.

One of the things that annoys me the most about having an invisible illness is strangers coming up to me and telling me that I don’t need my wheelchair because they saw me stand up or they saw me walk to my chair from the car. I have been called a fraud and told I’m faking it too many times to count just because I’m not paralysed.

SOME WHEELCHAIR USERS CAN WALK.

It’s not that difficult to get your head around. Some people use them because it’s dangerous for them to walk because they pass out or collapse, others use it because walking is painful and causes dislocations (me for example). There are many reasons why a person uses a chair but the biggest thing is, if you do not know this person then why they use a chair is none of your business.

Also if you see someone park in a disabled parking space and they display a blue badge but get out the car and look healthy and walk in DO NOT question them. If they are displaying a disabled parking badge then they are entitled to use that space. End of. You don’t know how painful it is for that person to walk. You don’t know what invisible illnesses they are suffering from. I was harassed by a man who didn’t think I needed my badge and shouldn’t be parked in that space and he waited for me to come out of the shop to tell me so. It was pretty intimidating and no one should have to go through that.

I wouldn’t go up to a random person and ask them personal questions so why does it become supposedly acceptable when that person has mobility equipment.

I constantly get asked

“Were you in an accident?”

“What happened?”

“Why do you need a wheelchair”

by people I have never seen before and will never see again.

Another thing, young people get illnesses too. Young people may need to use a wheelchair. It is not something you suddenly are entitled to when you hit an old age.

Some old people get so offended when they see me in my chair like I haven’t earned the right to use one because I haven’t reached a certain age. I’m forever getting snide comments about how I’m too young to have a wheelchair. I didn’t choose to need one and I’m pretty sure with all my pain I have earned the right to use one.

And lastly pretty people can be disabled too. The amount of people I know including myself that have been told we are to pretty to need a wheelchair is ridiculous. What do the two things have to do with each other? It’s nice to know people think I’m pretty but I didn’t realise only unattractive people could be disabled.

 So next time you see someone in a wheelchair and you want to make small talk, talk about the weather or something like you would with every other person not about what’s wrong with them.

Beth…x

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:

– Ehlers Danlos Syndrome (EDS)

– Fibromyalgia (Fibro)

– Chronic Costochondritis (Costo)

– Raynauds Phenomenon

– Probable Gastro oesophageal reflux disease (GERD)

– And I also have Gallstones at the moment

2. I was diagnosed with it in the year:

EDS – When I was 10

Fibro – Last year

Costo – This year

Raynauds – A few years ago

GERD – In the process of diagnosis

Gallstones – Last month

3. But I had symptoms since:

I was born. I was always complaining of pain as a child but no one knew why. Doctors kept telling me I had having growing pains, bone cancer, leukaemia, just wanted attention, my mum had munchausen by proxy and was making me ill and several others before I was finally diagnosed.

4. The biggest adjustment I’ve had to make is:

Learning that I cant do as much as others and that resting isn’t me being lazy. I struggle to know that I can’t do as much as I would like because my body just can’t keep up. I’m always over doing it and I suck at pacing.

5. Most people assume:

That there is nothing wrong with me or that it’s not as painful as it is as I look healthy, still go to uni and try to lead as normal a life as possible

6. The hardest part about mornings are:

Everything. Waking up, moving, getting out of bed, getting dressed. It doesn’t sound like much but it is so exhausting. Healthy people don’t understand why I find mornings so hard but all that energy needed when you’ve only managed a few hours of actual sleep is really difficult.

7. My favorite medical TV show is:

Grey’s anatomy.

8. A gadget I couldn’t live without is:

My iPad. I can keep in contact with friends when I’m having a bad day and can’t get out of bed and the chronic illness community is amazing and always there to offer support and virtual hugs. Its also something to play silly games or watch films on when I can’t concentrate on anything else and is lighter than my laptop.

9. The hardest part about nights are:

The insomnia. Not being able to sleep even though you are too exhausted to move is so hard. Knowing that you have to get up & function in a few hours and you still haven’t had any sleep is horrific. Also not being able to get to sleep because you can’t find a comfortable pain less position to sleep in is horrible.

10. Each day I take __ pills & vitamins. (No comments, please)

18 pills and 0 vitamins

11. Regarding alternative treatments I:

have tried acupuncture and loved it. I really want to find somewhere to get it again.

12. If I had to choose between an invisible illness or visible I would choose:

Invisible because even though its hard when people to struggle to understand, some days I can pretend to be healthy.

13. Regarding working and career:

I would love to be a Dr but I’m really not sure whether that will ever happen. I am currently in my 3rd yr studying Biomedical Science but I’m doing it part time so it will take 2 years

14. People would be surprised to know:

That I can’t remember the last day I had where at least one of my body parts didn’t hurt

15. The hardest thing to accept about my new reality has been:

Having to change my dreams.

16. Something I never thought I could do with my illness that I did was:

Get a B in 3 A levels and go onto uni.

17. The commercials about my illness:

There aren’t any,

18. Something I really miss doing since I was diagnosed is:

Not really since I was diagnosed by since my health declined, going for a walk where I actually get to walk instead of use my chair and riding a bike. I used to love bike rides.

19. It was really hard to have to give up:

My horse. He was my baby and I miss him everyday. I would love to own another one

20. A new hobby I have taken up since my diagnosis is:

Blogging and I’m trying to take up photography.

21. If I could have one day of feeling normal again I would:

Probably go on a day out with my family where they don’t have to go home early because I’m ill or spend their day worrying about whether Im okay.

22. My illness has taught me:

To treasure the small things, not take your body for granted and that my family are the best in the world

23. Want to know a secret? One thing people say that gets under my skin is:

“You’re too young to need that wheelchair”

Strangers coming up to me and bluntly saying “Were you in an accident, what happened? what’s wrong with you?”

“But you look so healthy”

Talk to me like I’m a child or deaf. I know that’s more than one but I couldn’t decide.

24. But I love it when people:

Treat me like the adult I am and include me even when I make things more complicated by being in a chair

25. My favorite motto, scripture, quote that gets me through tough times is:

“Life’s not about waiting for the storm to pass it’s about learning to dance in the rain”

26. When someone is diagnosed I’d like to tell them:

There is an amazing community online where you can make many awesome friends

You know your body best and Drs aren’t always right so get a second or third opinion if you think there is something extra

Drs tend to try and pin everything on EDS even when there is quite often secondary problems

Don’t be too stubborn you could do yourself damage

Having a day to rest and do nothing is not being lazy it’s essential to your health

Buy lots of cushions, ice packs, hot water bottles

A shower seat is always a good idea

Don’t be too proud to accept help

27. Something that has surprised me about living with an illness is:

How judgemental people can be but on the other had it also showed me that there are still amazing friendly helpful people out there.

28. The nicest thing someone did for me when I wasn’t feeling well was:

Cancel a night out to stay in and watch a film in bed instead, send me a teddy bear to cheer me up and so many more as I have amazing friends and family/

29. I’m involved with Invisible Illness Week because:

More people need to know that just because a person looks fine doesn’t mean they cant be in excruciating pain and need help. They are not lazy or making it up.

30. The fact that you read this list makes me feel:

So happy. Please help raise awareness by spreading it or making your own.

Beth…x

Invisible Illness Awareness Week

This week is invisible illness awareness week so there will be a few posts up that aren’t beauty related and are more about raising awareness and then some will incorporate beauty into them, maybe.

I have a few invisible illnesses Ehlers danlos syndrome being the main problem causing one.  I also have fibromyalgia, chronic costochondritis, Raynauds phenomenon, and the doctors think I probably have Gastro oesophageal reflux disease. I may do another post on some of these later in the week. Maybe if you want to leave a comment if you’re particularly interested in one.

Invisible illnesses are hard to cope with as everyone thinks you are healthy as it doesn’t look like there is anything wrong with you. Trying to explain that the fatigue is so heavy moving is difficult, Brain fog comes in and makes coming up with a sentence difficult. Trying to explain that you are in so much pain you want to scream is hard when you look like a healthy 20 year old.

There are so many invisible symptoms

– joint pain

– muscle pain

– nerve pain

– numbness

– tingling

– stinging

– fatigue

Brain fog

– medication side effects

– digestive issues

– subluxations

– nausea

– dizziness

– anxiety

– depression

– insomnia

I could go on. Imagine all of these added together every day. You know how terrible you feel when you have the flu and you don’t move from your bed, now imagine that every day of your life. You cant stay in bed every day. There are things to be done. We have to still try and function at an acceptable level.

To be told by people that we are lazy at there is nothing wrong with us makes us feel terrible. Some days I go as far as to think well maybe there is nothing wrong with me. Maybe I am exaggerating. Then I think NO. Healthy people don’t have to put their joints back into place in the morning because they dislocated in their sleep and then get up and get dressed & go to work. Healthy people don’t have to force food down when the feel so nauseous even water seems like too much but they need to take pain meds so they can get on with the day. Healthy people don’t have to lie down on the floor in the supermarket to prevent themselves passing out or to put back a subluxed hip.

I want people to know that invisible illnesses do exist. We are out there and we may look like your average healthy person but under all that is a barely functioning body that we have to use all our strength to fight to last another day without falling apart. My body is held together with will power, medication and pure stubbornness and a few splints & supports.

Don’t judge a book by it”s cover.

I hope all my invisible illness fighters are as well as you can be & your bodies are behaving and know that there are people out there that believe you.

Thank you for reading and I hope you can help spread awareness.

Beth…x