A Chronic Pain Update

It's been a little while since I talked about my chronic pain, but as last week I had my three monthly Botox top up I thought it seemed like a good time to update you guys.

The short version - I suffer from chronic hemiplegic migraines and chronic atypical head pain. This means a 24/7 headache and migraines that mimic strokes and put me in so much pain that I end up in hospital. I have Botox every 3 months and it is the only treatment I have ever had that works.

For the longer version, I've written a bunch of blog posts about it, but the majority of that is here, 'Living with chronic pain'. 

I started having Botox about 16 months or so ago, and have had it every 3 months since. It has been the most wondrous and miraculous thing I could have ever dreamt of. I am so grateful to the NHS for this treatment, I am so lucky to have found Doctors that listened to me and believed me, and I am thankful for the neurologist who changed my life by agreeing to give me Botox.

Botox is not your typical sort of treatment, it was discovered as a treatment for headaches and migraines completely by accident. People were having Botox for cosmetic reasons and began to report back that they no longer had the migraines they had always suffered with. Without people having Botox for cosmetic reasons, this treatment would never have been discovered, science and medicine are pretty amazing! It works by freezing the muscles in my head that cause my migraines and constantly spasm, causing my head pain. Once those nerves and muscles are frozen, no more pain.

Botox, for me at least, is incredibly painful. I sob every time. I have 36 injections in total, in my forehead, the base of my skull, the top of my neck/back, in my scalp around my ears. There is very little skin or flesh, this makes it very sore to have injections into those sites. The thing with Botox is, that the needle going into your skin is painful, but the feeling of the Botox going into your skin is even more painful. Botox is a poison, and it hurts. I bleed a lot, my forehead is usually a mess of blood afterwards. I have a lot more Botox injected than someone would have for cosmetic reasons, which is usually only a handful, whereas I have 3 large needles full of Botox. It hurts so much I can't concentrate afterwards, so someone has to drive me back and for my appointment, which isn't at my local hospital, but one 40 minutes away. For a few days afterwards I am incredibly sore, I bruise badly at the injection sites and I am not allowed to wash my hair for at least 2 full days after the Botox so as not to irritate the sites.

I am no longer on any medication for my chronic pain. I spent almost 7 years on various intense medication regiments, taking everything from tramadol, to morphine, to various SSRIs, all sorts of medication, even beta blockers despite being asthmatic. Beta blockers can cause asthma attacks and they certainly did in me, so whilst I tried to cope, desperate for anything to work, I couldn't continue. Not being on medication means I am allowed to drink alcohol if I choose to, something I had not been allowed to in years. I don't really drink, but it's nice to have the option if I want to. 

The Botox I have last for 3 months, I can always tell when my appointment is getting close because I can move my right eyebrow again, and I start to get a headache again. It is usually just into the moderate pain rating by the time I have my appointment. Thanks to Botox, I have not had to visit the hospital because of my pain even once. I can wear sunglasses again, tie my hair up, sleep comfortably, wear a head band if I want to, stay up late at night and not be in agony the next day, it changed my life.

I get real, pain free days. I have not had a single migraine since treatment began. I live an almost normal life without having to constantly worry about how many spoons I have left, or how much I will pay for those spoons the next day. Towards the end of my 3 months I do have to think about this, but to not have to do that every day... it's something I couldn't have ever dreamed of happening.

No more hospitals, no more medication, and most importantly, I am no longer in pain all day, every day. I love the NHS.

Much love,

Kitty xxxx

Our New Kitchen : Colourpop Haul

Stop Judging Other People's Body Modifications

My name is Kitty, and when I was 27, I had Botox for the first time. I've had it every 3 months since. I've been getting piercings other than my ears since I was around 17, and got my first tattoo at 26. Lately I've been seeing a lot of hate from the body modification community towards those who have plastic surgery and less invasive kinds of fillers and Botox and the like and it's not cool.

Before Botox, this was my life. Hospital visits and a whole lot more medication than I'm sharing in that photo. I suffer from hemiplegic migraines and a form of chronic headaches. This means I am in pain 24 hours a day, 7 days a week, 365 days a year. Or at least, I was. Thanks to Botox I've been able to avoid hospital visits and ambulances for a little while now and it's incredible.

I took this selfie the first time I ended up on a stroke unit. Hemiplegic migraines essentially mimic strokes without the brain damage. Slurred speech, one sided numbness, confusion, aphasia, drooping face, all the fun stuff. It is absolutely terrifying.

I've tried dozens of different medications and treatments, and nothing worked until Botox. I have it every 3 months and it totally changed my life. I have 36 injections in my forehead, scalp and neck and let me tell you, Botox bloody hurts like hell. I cry every time. I've been tattooed for 6 hours in one sitting and there is just no comparison in the pain. I can't move my eyebrows anymore, and the slight wrinkle I had coming in my forehead has vanished.

And since I had Botox I realised something. There is a running theme within the tattoo/modified community of a prejudice towards those who have pursued a different type of body modification. I'm talking lip fillers, Botox, fake boobs, nose jobs and more. The tattoo community seems to consider it's type of body modification superior to these other types of modification because they are more associated with vanity than tattoos are. Because Botox hides aging, or fillers increase your pout, people believe their artwork covered bodies are different or better. I see so much hate from people who claim to be open minded towards those who have these other kinds of modification.

The body positive community is all about embracing who you are, and loving yourself, but that isn't always possible for some people. I felt like my body hated me before Botox, and now I can love it because it doesn't feel like it is rebelling against me. People get fake boobs because they've always been self conscious about their breasts, or because they are having reconstruction after breast cancer, or because they just love the look of huge fake boobs! You might love the exaggerated look of lip fillers, or have always wanted a split tongue, or a full back piece, it's body modification in a different form. And one isn't better than the other.

Tattoos aren't better than Botox, your nose piercing isn't cooler than a nose job. The body modification community has always claimed to be supportive and welcoming, but it is judging an entire group of people because their ways of modifying their body are different to their ideas of body modification. You aren't superior because you have tattoos and someone else has cheek fillers.

As someone who has always felt part of the alternative community, to see us judging other people's choices hurts, especially when I didn't have a choice about whether or not to have Botox. Seeing memes and jokes about frozen foreheads and about how awful people must be who have it, it hurts. Being judged by people who know nothing about you sucks. Why people have body modification is none of your business, and what kind of body modification is 'OK' is none of your business either. 

I believe everyone deserves total body autonomy, and that includes their right to get their preferred body modification without judgement from others. I want to see less judgement from the alternative and body positive communities, we have to learn to embrace everyone's choices about their own bodies. Whether you like the look of their modification, or would never have it done to yourself, you have no right to judge. The reasons I have Botox are irrelevant, I shouldn't have to justify it to you so you don't judge me.

Not your body, not your choice.

Much love,

Kitty xxxx

PS. All my tattoos are by Keely Rutherford!

A Morris-Wood Wedding : Working Around Your Health Limitations

One of things I was most worried about when I initially got engaged was my health. At the time I got engaged my chronic headaches and migraines were a real problem for me. I've talked about my life with chronic pain a few times, and for more specific details on it you can read about it here and here, learn about my treatment here, and watch my vlog about it here! I'm not going to go into specifics about it today, but instead talk about how my health has affected my wedding.

When you have a chronic illness, you tend to know there are certain things you can and can't do. I've been incredibly lucky to begin having Botox for my chronic head pain which means I can now do things I couldn't do before. When we got engaged I didn't expect to be able to wear a veil, flower crown, tiara, anything that would sit on my head basically! It would mean more pain than usual, and really paying for it the next day. It's just not worth the risk to potentially end up misterable on your wedding day.

For me, it was about compromise. Looking the way I want to on my wedding day vs the repercussions of essentially knowingly exacerbating my pain. A headband was an absolute no, but could light weight cute clips work? I could probably abide those for a few hours for the reception and photos, and then ditch the for the evening do. Could I plait ribbons into my hair? Or wear a veil that draped over my whole head front and back without being attached? 

Being 'you' on your wedding day is so important, but not at the risk of damaging your health further. More recently I have been diagnosed with carpal tunnel in both of my wrists. I struggle to hold weight in my hands, grip properly, and they ache or hurt almost all of the time. One of the things I've dreamed about is my bouquet. A giant thing, full of my favourite plants and nature, my 5ft 11 frame meant I felt I could carry off a larger bouquet than most. And now I can't open a bottle of Pepsi Max, or  have to get Stu to help me cut up my food. So reality hits. I can't carry that dream bouquet.

And now I have to reconsider my options. My florist is coming up with ideas for me, but it looks like I'll have to opt for a different design, with a wrist strap of some kind, or risk being unable to use my hands properly the next day. Or, I can wear wrist splints on both of my wrists and aim to get help carrying my bouquet during the day. I must admit, this is the option I like the least. My splints give away my pain, and don't match my outfit! If I do have to wear them, I could glam them up, wrap them in ribbon, or glitter them up. There is no avoiding seeing them, so if I do wear them, they'll have to be made to look like they belong. I will admit I cried when I realised that I might not be able to have the one part of my wedding I was so set on, I cried a lot. My health has impacted upon my life so much, but my wedding day.... I had been desperate to avoid that.

Spot the wrist splint!

You should feel amazing on your wedding day. Try to get a good nights sleep the night before (which I know is going to be so hard with how excited I'll be!). So when I wake up I will ensure I take all my usual medication, drink plenty of water, take some painkillers, and make sure I have more in my wedding bag. I will eat an appropriate breakfast. Self care is hugely important, and a good start to the day can really help. I plan to rest if I need to, the bridal suite is there to sneak off to if I need some down time. 

2 of my 4 bridesmaids!

The key thing is asking for help. I plan on roping my bridesmaids in to help carry my bouquet so I can rest between photos. They'll be commissioned to keep me hydrated properly too. My wonderful and enthusiastic florist at Fleurtations is determined to find me a way to carry my dream bouquet. You never know what suggestions people might have, so ask for help! It's OK to acknowledge that there are things you can and can't do, but it's also more than OK to ask people to help you with your health on the day. Your bridal party love you, so explain the situation and I am sure they will help look after you.

Do you have any tips for the spoonie Bride-to-be?

Much love,

Kitty xxxxx

My Hen Do Outfit With LovedRobe : Choosing Your Wedding Rings

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2015.

2015 was been a hell of a year. It's had ups, and more downs that I would care to remember, and there are loved ones who aren't here to see in the new year that I wish more than anything were here. I thought I'd do a little summary of some of the good bits of 2015, those moments I want to remember and celebrate.

I went to Tattoo Tea Party and got tattooed by Keely Rutherford. It was a really great event with some incredible artists, and it was fun to get tattooed in a totally different environment and see how I dealt with it. Plus, True Romance inspired moth!

I surprised Stu with a tattoo by Lawrence Canham for his 40th birthday. He was so excited, and Lawrence totally blew us both away with his work. It was so fun being able to surprise Stu!

I went to a Scarlett & Jo meet up in Sheffield hosted by Georgina Grogan. It was the first time I had met any other plus size bloggers, and it was so lovely to finally get to!

Festivals! Stu and I went to 2 fake festivals this summer, Boltfest and Feswich, and had such an awesome time. It is always good to get away from home with the one you love and adventure. These are both actually free festivals and so so good for free!

I got Botox! I vlogged and blogged about it, but the short version is this - I have had serious chronic headaches and migraines for the last 6 years that have left me in pain everyday, in and out of hospital, and generally limited in what I could do. Botox has given me my life back and allows me to live a pretty normal life which is something I truly believed was only a dream for me. I love the NHS!

I went to London and met Steph from Nerd About Town. Ever meet someone and feel like you've known them forever and just totally adore them right away? Yeah, that happened. What an absolute babe.

I got my tattoos turned into a lower leg sleeve by Keely Rutherford! I have one more session to go before it is finished, but I love my leg soooooo much. Isn't it the prettiest?!

I went to the Curve Fashion Festival and met more amazing ladies than I could ever have dreamed of! To be surrounded by so many incredible and inspiring people was just brilliant, and I met people I just know I will be friends with for the longest time. 

I did a whole ton of photoshoots but I'm going to feature my favourite photos of the year in a seperate blog post.

These are my top instagram photos of 2015! This was so fun to see. It's totally different from last year's top photos on my instagram which was all my photography of models instead.

And finally, but so so importantly, Sinbad joined our furbaby family! Every day all my fur children just totally blow me away with their love. I feel so honoured to be their Momma! Sinbad has been through such a trauma with getting shot in the eye, a new home, and losing his eye, and he is still the sweetest and loveliest little handsome man. He follows me around all the time and sleeps on my back. MY HEART <3 He makes me have all the feels. All of them!

What were your 2015 highlights? What gave you all the fuzzies?

Much love,

Kitty xxxx

I snagged myself some bargains in the Asda George sale!

Living with Chronic Pain : Self Care

One of the hardest things about chronic pain, is knowing your limits, and trying to live the most full life you possibly can. It's taken me a long time, but I finally feel like I have a relatively good grasp of my own limits, so wanted to share some of my tips!

1) Listen to your body. For a long time, I did not listen to my body. Instead I pushed and pushed. I was angry that I couldn't do everything I wanted to do. And I paid for it. Big time. Now, when my pain starts to get worse, or I feel those familiar twinges, I reassess the situation. Am I out somewhere that is hard work for me? Can I go home? Can I rest? Have I taken my medication? Do I need to eat or drink? Typically for me, if I start to hurt more than my 'normal', I go home, and I rest, or sleep.

2) Sleep is important. Sleep for me, is probably the most important thing I can do to help me live a more normal life. I know that I need 9 hours a night to function right for me. More when I can have it. I don't like distractions when I sleep. No lights, no noise, and I keep my room cool so I can snuggle up properly in bed. Sleep is your friend.

3) Take your medication properly. It sounds like a common sense thing to say, but take your medication how you have been advised to. If that means you don't drink alcohol because it interferes with your medication, then you don't drink alcohol. Set alarms on your phone to remind you when to take them. I quit alcohol the moment my Doctor put me on medication that advised against alcohol. I used to take medication that meant I had to avoid direct sunlight, so I carried a parasol and stayed in the shade. Do what your medication needs you to do to get the best out of it. Make sure you don't miss a dose and keep your repeat prescriptions up to date.

4) If you need help, ask for it. Whether this is in your personal life, from your Doctor because you need better medication, at work, or anywhere else. Please ask. When you have an invisible illness, people can't always see when you are suffering, so ask. I used to hide away and deny when I was struggling. Now I realise that those who care for me want to help me, and will, if I just let them know I'm hurting.

5) Don't give up. It can feel like no one believes you, and that your Doctor thinks you are losing it, but you have to keep fighting because you deserve better. It took me 5 years to get a diagnosis, and more doctors and appointments and hospital trips than I care to remember. You have to fight because you deserve to be able to live your life as best as you can, and to be in as little pain as possible. Keep arguing, keep pushing for referrals, make them take you seriously. Take someone with you to appointments if you find them hard, I often do. Fight and don't give up, because you do deserve better.

What are your tips from dealing with chronic illness or pain? Let me know! Know that you aren't alone and I am always happy to help in anyway I can.

Much love,

Kitty xxx

Living with Chronic Pain

I haven't written a blog post about my chronic illness before, but as it is currently kicking my ass, it seemed to be a fitting a time as any to write about it!

This is the 'me' I typically present on the internet.

Super chirpy, very smiley. This is my ideal me. I try my best to be happy as much as I can, and even the customers at my day job would probably describe me as chirpy, but unfortunately this isn't the me that I always am. Sometimes, I look more like this....

Tired, kinda vacant eyed, rocking some heavy duty eye bags and my curly hair is all drooped. I look all sorts of wonky and worn out.

And the reason I look like this, and believe me, I feel much worse than I look, is because of chronic pain. I suffer from chronic atypical headaches and chronic migraines with aura. My headaches are called atypical because they don't follow normal patterns. They are atypical because they literally never, ever, go away. There is not a moment I am not in pain, even while I sleep. My scalp hurts, my jaw hurts, my cheekbones hurt, the bridge of my nose hurts, my forehead hurts, my teeth hurt. 24/7. Experiencing a migraine with aura, is basically like suffering a stroke, without the permanent brain damage. The side of my face droops, one side of body goes totally numb, I become confused, I can't speak properly because even my tongue is numb on one side, I know what I want to say, but cannot make my mouth say it, and then afterwards, the pain and exhaustion.

There are various things that trigger my pain, or exacerbate it. I can't wear glasses or sunglasses for any real length of time, I can't wear my hair up, I no longer dye my hair because having to pin my hair up is painful, I wash my hair twice a week at the very most, I need to sleep for at least 8 hours a night, bright sunshine hurts, the heat hurts, hats and hair accessories hurt, carrying heavy things on my back hurts, brushing my hair hurts, there are times that it is agony to even lie on my pillow and I make a weird little fort to prop myself up so I don't have to touch my head to my pillow. I wear a gum shield at night because the pain makes me grind my teeth, brushing my teeth hurts, chewing hard food hurts.

I used to fear that being ill would make me be alone, that no one could possibly love someone who could be such a burden. And I was so wrong. I have a fiance who looks after me when I'm ill, who understands when I have to leave nights out, or cancel plans. I have friends who understand, who text me to ask how I am, or who just seem to know that I'm not my usual version of 100%.

Because well, when you are in pain all the time, you have your own version of 100%. My version usually means I'm at about a 3 or 4 on the pain scale. A 3 I can work with. A 3 I can ignore to a large extent. A 3 means I can go to work, maybe go out in the evening even, provided I am home and in bed by 11 at the latest. Today I've been a 7. That means I'm distracted. I can't keep my thoughts focused, I've eaten only soft food, I visibly flinch when the pain surges, I don't want to be touched, my hair just hangs down, having the molars in my lower jaw removed seems like an excellent move right now, my scalp feels like electricity if I touch it, I'm exhausted, even frowning hurts my face.

Every day is different. I've taken so many different types of medication, that I have literally run out of options now. It's been 6 years, and I have just been referred to botox, which I think is my last remaining option without more drastic surgical options.

So fingers crossed, for more spoons for all those other lovelies out there suffering with chronic illness, and for less pain for us all. I feel for you, because so much of our time is spent fighting and trying to prove that we are ill and it isn't in our heads, and pushing to make doctors do something about it. I've met so many brave amazing spoonies since my illness started, and I am so so lucky.

Got any questions for me? Feel free to ask away!

Much love,

Kitty xxxx