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

I'm 27, and I had Botox.

On the 5th August, I had Botox for the first time. I am 27 years old. Until relatively recently, I still got ID'd even. I had Botox for quite an unusual reason. I have Botox for medical reasons, to help with chronic headaches and migraines. I am absolutely for full body autonomy, so if someone wants to get Botox for cosmetic reasons, awesome! My Botox was somewhat different, because it designed to specifically freeze the muscles and nerves that cause my chronic pain.

The morning of my appointment, I looked like crap to say the least. I had no idea if I would approved for the Botox treatment, but after 6 years of pain every single day, I was desperate. I've tried dozens of different medications, and had acupuncture, and all they did was take the edge off. I decided to not wear makeup, I didn't want to hide the reality of being in pain every day. Thanks to instagram filters, this is quite flattering, the bags under my eyes and my dark circles aren't too obvious. I hadn't washed my hair for 5 days, because the pain in my head meant it was too much to wash my hair regularly.

My appointment was in a private hospital. I was referred as an NHS patient however. It was very fancy and had free hot chocolate, that I had to have!

I went in and spoke to my neurologist, he asked me about the treatments I have had, and I showed him the pain diary I have kept for the last 3 months. He began to talk about various medications I hadn't tried and my heart sank. I wasn't going to have Botox. I was going to have to try more medication first. And then, he uttered the words 'after the treatment today' and I couldn't hear anything else. I was fighting back tears immediately. He believed me, he wanted to help me. He wanted to give me Botox. I was so happy!

And then, the Botox. I had 36 injections, 12 in my forehead, 12 in my scalp behind my ears and slightly above them, and the rest in the base of my scalp and my neck. And oh my gosh did the ones in my forehead hurt. There was no more holding back those tears! A few minutes of deep breathing, and it was done. My next appointment was made for November and on I went!

I took these immediately after my appointment, hence the red crying eyes! You can see where one of the injections made me bleed, and the slight lumps I had from the Botox.

It was glorious sunshine when I left and we drove back. It was beautiful. I was so happy, and so excited!

Couldn't stop grinning. I had so much hope for how the treatment would work. The neurologist had told me that for 9 in 10 patients, the pain would be improved by 70%. I had everything crossed! I went to bed early that night, my forehead hurt and I was tired.

And the next day. The next day I woke up, and I didn't hurt.

For the first time in 6 years, I wasn't in pain. And I cannot even begin to explain how that felt. Since then, the Botox has settled more, and I have been basically pain free! My forehead and the injection points were sore for a few days, and my jaw has still been a little painful because I clench it out of habit and grind my teeth.

I rang Stu that first morning, and he laughed the most amazing laugh when I told him I wasn't in pain. It was the most beautiful sound.

I had to share this. It was too funny not to! I can't move my eyebrows anymore, no more The Rock impressions for me!

Got any questions? Please feel free to ask away!

Much love,

Kitty xxxxx

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