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

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A Morris-Wood Wedding : I Was a Bridesmaid Who Got Demoted

This week's topic is one I have personal experience of, so it's a tough one. Something I see asked a lot in bridal groups on facebook is 'How can I demote my bridesmaid?'. Often the people asking want to know if people have done it and remained friends, how they did it, and if it was worth it. I'm a little unusual, because I've been on the other end of things. I was the bridesmaid who was demoted. I've written a little about it before here, but that was mostly about how you should treat your bridal party, than my demotion story. So... here goes!

So first off, you've probably excitedly asked your nearest and dearest to be your bridesmaid, having thought about your friends being a part of your day with your partner. I'm going to talk about my experience as a bridesmaid being demoted, but of course your bridal party does not have to contain only women! Gender is irrelevant when it comes to who your best friends are. People tend to come up with their own terms for men in the bridal party, or women who are part of the groom's party, so I'm going to stick to the term bridesmaid for my own ease.

Your wedding is more than likely at the fore front of your mind most of the time. There is a lot of planning to do, and a lot of expenses to keep in check, and hopefully, just hopefully, bridesmaids who will help you with some of that.

I was due to be a bridesmaid for my best friend from university. We lived across the country from each other, her in London, me in Grimsby, so distance was hard, but we chatted online a lot. When she got engaged I was thrilled, and I was so excited when she sent me a card in the post to ask me to be her bridesmaid. What an honour! I said yes right away. For a little while, I didn't have any responsibilities. I lived so far away I couldn't go venue hunting, or dress shopping, but I kept up to date with everything that was going on.

Then we booked a date for bridesmaid dress shopping, awesome! Off I went to London on the train, which isn't cheap. But worth it, I'm a bridesmaid! She was very specific and wanted a certain brand, who don't make plus sizes. Problem number one. I mentioned this to her right away, and said I could get someone to make the exact same thing, but to my sizes, as I know an amazing dress maker. Not good enough, she wanted us to wear that specific brand. So off we went. She picked the dresses, and very kindly bought them for us. It was 3 sizes too small for me easily, but the biggest they did. I bought some fabric from the store to get it made bigger. I thought problem solved. She did not. She wanted me to wear the dress as it, and fit into it.... so she expected me to lose weight. Not her body, not her choice, not cool.

And then the real problems started. I experienced what was initially thought to be a stroke. I was rushed to hospital and spent time on the stroke ward till it was confirmed I hadn't had a stroke, but instead all the symptoms of it. 3 days later it happened again. Another ambulance. Another stroke ward. In the first 2 weeks that this started happening, it happened 20 or more times. In the first month, I couldn't even begin to tell you how many. I was so ill. It was exhausting, I threw up and couldn't eat or stay hydrated, and the pain. The pain was excruciating. I already had a chronic pain condition, but this was something else. I was essentially housebound and needed supervision due to how confused I got during one of my 'episodes'. I'd later found out they were severe hemiplegic migraines that were exacerbated by medication I was taking. 

Then the hen do announcement came. Disneyland Paris. There was no way I could go. I hadn't worked in a month, so I hadn't been getting paid. I was completely broke. I needed someone to keep an eye on me at all times, I couldn't drive, I was in constant pain and exhausted all the time. I would have been a liability travelling, and I would have been a burden on those who could go.

She wasn't impressed. One of the other bridesmaids couldn't go either. So she had another hen party, this time at her Mum's house which was around 2 hours from me by car. I got permission for my Mum to come so she could drive me as I wasn't allowed to drive at that point. The sudden numbness and violent stabbing pains made it unsafe for me to do so. So my Mum took me, and I had a lovely time. My illness wasn't really mentioned till the very end, when her Mum commented that she heard I'd been ill. My Mum explained the situation and she was shocked. How could someone so young be so ill suddenly? I got the feeling they didn't really believe us.

Over the next few weeks, things hotted up. I went back to work part time. And every day, the messages began. I had to find shoes, a bag, and a cover up. I have size 10 feet, so the shoes were an issue. I found some she liked and approved and ordered them. She didn't want me to have a bag, even if Stu looked after it for me all day. I needed a bag, because I was taking approximately 70 pills a day and had emergency medication I may have to take to prevent an episode at very short notice. She didn't agree that I needed a bag. I never found a cover up she felt was OK. I have no idea if anyone did. I got my earrings approved because I have stretched ears. Then she changed her mind and said they weren't OK after I'd ordered them. I was then told I was to wear no jewellery, save for one single ring. I thought that was pretty intense, and aimed at me, because my 'thing' is my rings. Whatever, I can do that. It's not my day. 

And the final issue she had. My hair. I had pink hair. I had pink hair when she asked me to be bridesmaid, and had had pink hair for years, since she met me essentially. She wanted me to have my hair returned to a normal colour, so she could dye her previously blonde hair pink and not have me 'steal' her pink hair thunder. I was over it. It might have been her day, but it was my hair! I ignored those requests.

Then her Mum began emailing me. She'd ask me a question, then half an hour later when I hadn't replied email me again. And again. And facebook message me. I was still struggling with my health massively, and I was usually getting these messages during the few hours I tried to get back to my job, so couldn't respond. You can't expect people to be available 24/7 for your questions.

And then, the final messages. I got an email telling me that we needed to talk. That I needed to seriously think about my ability to dedicate myself 100% to her wedding, and being bridesmaid, and to stop using my health as an excuse. I was no longer to be her bridesmaid, but I was more than welcome to attend as a guest if I wanted to. I was to return the dress I had paid to be altered to her immediately so she could sell it to recover the money she had wasted on me being bridesmaid.

I, very politely, wrote a reply that in essence, told her to ram it. I wouldn't be returning the dress, and I wouldn't be attending her wedding. My health was my priority. At that point hospital trips were a regular thing for me, and I couldn't sleep through the night even because of the agony. Some awful things were ultimately said on both sides, and we've never spoken again.

The only time I think of her now is when people discuss demoting a bridesmaid for not being dedicated enough. Because it's not just a case of demoting a bridesmaid, but of potentially losing someone you love, forever, irreparably. Please think really long, and hard, before you demote a bridesmaid. Because you are taking the risk that you will never be able to speak to that person again. I don't know if that is what my former friend expected, but for me there was no going back because of the circumstances. She felt her wedding should have been more important to me than my own health. And it couldn't be.

You don't always know what is going on in your bridesmaid's lives. They could be going through any kind of trauma that is distracting them, so please try to be understanding. Your day might be the most important thing in your world, but it isn't in theirs. I totally get that every circumstance is different, who knows what awful thing your bridesmaid may have done, but I wanted to share my own experience of being demoted, to try to help show you the other side, and to show you what the outcome ultimately was.

A friendship over, because I couldn't dedicate myself due to circumstances beyond my control.

Do you have your own bridal demotion story? I'd be so interested to hear more from both sides.

Much love,

Kitty xxxxx

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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