This is a question I have been asked numerous times over the past few weeks by every medical professional I have seen. I think they ask it because if I say yes, they could prescribe me something and be smug in the fact that they solved part of the mystery that is Hannah Green.
They seem slightly confused when I tell them that no, I wouldn’t describe myself as depressed. I ask them to try to picture themselves in my situation and ask whether they think they would be jumping for joy. Yes the last few weeks have been tougher than ever but that is because my symptoms have worsened. Therefore, yes, I have felt sad, I have been extremely emotional and teary, I have been quiet and felt very isolated. But I am not depressed. I continue to try to keep positive as and when I can and smile and move on once I’ve kicked myself back into shape. They just find this hard to understand.
I have now seen an immunologist, a dermatologist and a neurologist (privately otherwise the wait was until April next year!) and still no one can help me. They can’t even help me dumb down the pain or the burning on my head. I have been prescribed sleeping tablets and Tramadol for the pain but these combined with some of the other tablets I’m on mean that I am a zombie most of the time. I haven’t driven for two weeks again and I can’t walk far because my legs feel like jelly and I’m unstable on my feet.
The dermatologist didn’t really know what to do or say so has asked me to go next week for a case conference where several specialists are in the room and can assess me – that part is great but she also wanted me to let my hair grow for two weeks in the lead up. I tried to explain through my tears that I never shave the huge patch where I lost my hair, just the parts that kept growing because otherwise it was so unsightly. After a week of regrowth and feeling my confidence shrivelling with every day, I rang her and explained once more how distressing it was. Thankfully she said that if I could take lots of photos of it, I could bring them along and shave my hair. So that has definitely been something good that’s happened. Well, it is but that was until I had to shave my re growth off. Although I wanted it gone, for a short time it has been nice to stroke the soft hair that was growing. That must sound so odd to you but I haven’t had hair on my head for a year so to know it still grows was a relief, it was a joy to use a little bit of shampoo for a week, to have to use a towel to dry off my hair after a shower. So shaving it was like a grieving process once more. Not as bad as before because I was regaining control again and you’ll be impressed, I used shaving foam and a razor and wet shaved it off without a cut in sight – now that is a talent I never knew I had!
My body – mainly from the neck up is fighting off any drug, ointment or cream I use to help me. I have the most painful, itchy, irritating patches of raw skin around my eyes, cheeks and eye lids. It hurts to smile, blink – it’s just an added symptom that is unbearable. I have red, painful spot like lumps and bumps on my scalp that come and go but are so painful too. To combat all of this I am finding myself trying to do things to occupy my hands rather than use them to itch and scratch my face and make it even more painful. It’s a counter productive experience because doing anything on top of all the drugs in my system means I get super tired and have pay back from anything I do but I feel like I don’t have an option because otherwise I would get depressed. So, I’ve tried new baking recipes, made a personalised advent calendar for the family, watch TV or films and sorting Christmas presents and cards on a budget! I also have spent so much time sleeping again which is the only true release I get. My word I never thought my thirties would be so fun!
So, I’m hibernating again. I don’t feel like going out because I am very self-conscious but also because I don’t physically feel like I have the get up and go to do much, to deal with the noise and bright lights and people’s stares. And with today being December 1st it makes me sad to think that a year ago I was telling myself, it’s okay, this Christmas is going to be pretty rubbish but by next year you’ll be better and with some hair regrowth but that simply isn’t the case.
So no, I am not depressed, maybe I’ve dipped in and out of it in split seconds of weakness but I think most people would in this situation. No one can be positive all the time and that’s alright.
Happy Advent everyone,