I’ve always been a bit of a hippy when it comes to my hair. I let it grow and grow until it gets slightly ridiculous and then finally give in and get it cut.
A few years ago, I was having a lot, and I mean A LOT of problems with my shoulder joints. I was working in an admin role at the time, and I think the amount of computer work was largely to blame. Eventually, I could no longer type and had to resort to voice software or lying flat on my back with a laptop just to check my email. My shoulders got to the point where I couldn’t raise my arms at all, and turning over in bed was accompanied by a few very loud screams and tears.
At that point, my hair was all the way down my back. Washing it when I couldn’t raise my arms was near impossible, as was brushing or styling it in any way. If you’ve never had hair that long, you may not realise that if you don’t plait it at night, it pretty much turns into a giant dreadlock while you sleep. It had to go.
So, I cut it all off, and I got the most compliments I’ve ever gotten about a haircut. But I hated it. Not because I thought it looked bad, but because I felt my disease was controlling everything in my life. I couldn’t even choose the length of my hair.
Skip forward a few years, a few cortisone shots to my shoulders, and a partial remission....
I don’t think I blogged about this at the time, but the trigger for Raynaud’s and some other symptoms in me last year was actually hair dye (I can’t say that with any scientific accuracy, but I’m pretty sure it was true.) I’d dyed my hair once before, and experienced a pretty bad flare immediately following. I’d assumed, at the time, it was either coincidence or down to the latex gloves the stylist had been wearing as I am badly allergic to latex. But, the night after having some foils done the second time (with the stylist using non-latex gloves) I woke at 3am to find my hands turning blue and my lower arms doubling in size with swelling. After a bit of internet research, I found it’s actually pretty common for SLE patients to experience flares or for symptoms to be triggered by either chemical or hena type dyes. While I don’t have a clear diagnosis of SLE, my guess is if it can happen with SLE it can probably happen with other autoimmune disorders as well anyway. The whole thing left me a bit wary of doing anything to my hair, and since I’ve been so sick in the last year it’s been a long time between hair cuts for me!
So, just as I was gearing up to get my hair cut again, I saw an ad for the Pantene Beautiful Lengths Programme.
When my mum was diagnosed with a terminal brain tumour, she received a wig from the Look Good Feel Better Programme. I do really think this helped her confidence, at a time when things were pretty difficult. While what I went through with having to cut my hair was nothing in comparison to loosing your hair because of cancer and chemotherapy, it did give me some tiny insight as to what that might be like.
My hair is not always that healthy. The diseases I have do cause hair loss, as do the types of chemotherapy I’m on (though of course not the same level of hair loss you see with the doses of chemotherapy used for cancer.) But lately, it’s been looking pretty good. It was long enough to meet the minimum donation requirement, and I’ve only ever used semi-permanent dyes (and those only sparingly as discussed above!) So, I decided to cut and donate my hair for use in wigs for cancer patients.
I swear my elbow and shoulder joints breathed a sigh of relief as I washed and plaited my long hair for the last time last night. Though my joints are nowhere near as bad as they used to be, they were still getting pretty sore trying to keep the lengths from tangling. My neck may actually feel some relief too - the hairdresser weighed my ponytail for me. It was 79grams!
This is going to be way easier to take care of, and I’m pretty happy with how it looks. I know I don’t look terribly impressed in this photo, but that’s just because I was feeling quite ill when I got home. Bit too much sun, and not enough food today. Some dinner, a few meds and a lie down and I’m feeling much better!
If you’re thinking of donating your hair, all you need is 8 inches/20 centimeters. Don’t be alarmed by the photo of my ponytail – that’s 15 inches/38 centimeters. I figured if I was going to do it I’d go the whole hog!
Thanks for reading
Little Miss Autoimmune