The past few weeks since the party have been some of the toughest. The flare up fall out was much worse than I could have anticipated – a low moment was having to text for help from mum and dad to help me out of bed – fun times! However, the party was so special and so very worth it. Having almost everyone that we love in one room, eating cake, dancing and looking so happy was just wonderful. I will treasure that night always.
Due to the flare, or possibly because I am simply fed up of this whole scenario, I have been emotionally unstable to say the least! Mum only had to ask me what was wrong yesterday and out flowed the tears – I ended up ugly cry laughing because I just said, “I’m fine, don’t touch me!” which mum thought was hilarious, but I’m sure we all have certain people that only have to look at us, touch our hand or say something nice that will set us off right?! I’ve also turned to doing some more research in the past few days to try and refocus myself into being proactive and positive rather than continuing down this path I’m on which isn’t very nice at all.
**Disclosure warning here – all of the below is my understanding of certain diseases and therefore may not be 100% accurate.**
My specialist appointment has come through for November, yes November, so I thought that doing some more of my own digging might throw up some more options in the meantime. From looking at various M.E. websites and reading what other sufferers have gone through, I came across Lyme disease. Now, I know it’s a long shot but it resonated with me enough to request the blood test for it. Many people diagnosed with M.E are misdiagnosed and have actually got Lyme disease. Doctors know little about M.E and seemingly even less about Lyme disease. The difference being you can test for Lyme and if caught early enough, it can be treated with a course of antibiotics.
Lyme disease comes from ticks that carry Borrelia and pass it to you when they bite. The symptoms don’t always occur immediately, some times as much as six months after the original bite. I was in Thailand six months before I started to get ill and when visiting an elephant orphanage we were bitten quite a lot, some of mine resembling that of the bite shown for Lyme disease. The symptoms for Lyme are almost identical to M.E, especially if not treated quickly enough. What I found interesting was that it covers the symptom of facial numbness or pins and needles which is a symptom that is unbearable for me. My doctor as always has been supportive and has sent me for the blood tests even though there is a chance they will reject it as it is one of the more expensive tests on the NHS. I just feel that its something we need to rule out – or in – before moving forward. Funnily enough, the antibiotic used to treat Lyme disease is one I am on currently to treat the bacterial infection on my face. But as my GP mentioned, if it is Lyme, it’s almost certainly too far along for these antibiotics to treat it. We shall see!
I have also noticed that I have become sensitive to certain foods, especially cheese, so I have cut those out until I can get some allergy testing done. I didm however find some more interesting explanations for the possible reason behind this. As I have found, auto immune diseases start to fight certain parts of our bodies thinking they are foreign objects – for me it is my hair. But also, so much is linked to our guts. So, as you can see from the image below, if certain food particles pass through the gut lining, it can lead to food sensitivities, your body starts to think that particular food is a foreign object and tries to get rid of it.
Now, something else I want to try and drum up support with is Alopecia Awareness month which is in September. If you’ve read my blogs since the start you will know how much alopecia has affected me, not just physically but mentally and emotionally and I have a strong urge to spread awareness of the disease so here’s where you can help!
Alopecia UK are promoting a fab idea that for each Friday in September is Fun Hat Friday! Now this can be done in offices or any other non school setting, the idea being that you choose a Friday in September where everyone wears a fun, silly hat, takes a selfie and posts it on social media. Then use the text number to donate £3 to Alopecia UK. If you post, use the hash tags #alopeciaawarenessmonth #funhatfridays and to link me to your posts using #hairlesshannah
I have attached the poster that you can display and use in your places of work; or you might want to host a little Friday night Fun Hat Friday games night, family meal, aqua class or pic-nic where you join in and donate.
However, if you work at a school, your children are at school or you have teacher friends, I’d love to try and do something on a bigger scale. Obviously the children won’t be able to text and donate so the idea would be for the school to choose a Friday in September (or a Thursday in Dubai, you don’t get away with it that easily!!) where the staff and pupils bring in a donation and wear a fun hat for the day. The donations can then be totted up and a cheque sent to me so I can then see what we’ve raised and I’ll send it all in to Alopecia UK. Although I’m not working at the moment, I would be happy to come and do class talks for circle times or if I feel brave enough, do some assemblies to explain what alopecia is and what Fun Hat Friday is for. Another option is that I would be happy to make a PowerPoint that you could use in class explaining what alopecia is. All you’d have to do it let me know.
I know there are so many worth while charities around and sometimes the smaller charities, like Alopecia UK, get left out so I would be so appreciative if anyone wants to set up an event or get a school involved. If you do join in, please let me know and send me your pictures. And don’t fear, closer to September I will remind you all!
Throughout the month of September I will be using my Instagram account to share photos of how alopecia has affected me and will also post your photos of Fun Hat Fridays so come and follow me: @greenhannah86