When a lovely friend popped in earlier this week with some beautiful, bright yellow roses for me she said, “here is some sunshine to brighten your day.” It really struck me that actually, at the moment I need little things like this because a) it’s January and it’s dark and cold and b) I’m finding most days quite tricky at the moment so therefore I need to find joy in the little things and ‘make my own sunshine.’
As mentioned in the last blog, I know it is okay to not be okay but I also realise I am a little hypercritical because I do try and cover up how I’m feeling so it doesn’t afffect those around me. But I am learning that in order to find my little pieces of sunshine, I have to release the negative feelings that I have.
This week has been an especially hard week for me for a few reasons. Last week I’d managed a few more days where I’d felt a bit stronger and the arthritis seemed to be easing. But last Friday I finished my anti inflammatory drugs and as a result, the pain has flared again in my right hand.
I brought my doctor’s appointment forward because of the pain I was experiencing. I understand why and trust my doctor: she didn’t want to put me back onto yet more tablets because I’ve been on some form of drug for three months now and it could start to affect my gut which obviously I don’t want. So, I’m back to basic ibuprofen which seems to be helping but it’s so frustrating to feel like I’ve taken a few steps backwards again.
Over the last few weeks I’ve participated in an alopecia study for a grad student who wanted to do research into how it affects women and their perception of themselves. It gave me a focus each day: the maximum time was 30 minutes per task which was a nice focus for me and about the time length I can spend on the computer before the back light and typing get to me. The final task asked me to reflect honestly on how I’d felt about the activities and it really made me realise how much I am not okay with the situation and that the smile I portray covers up so much.
There was one task required me to take photographs to portray the day in the life of a woman with alopecia. Now, for those of you who know me, I love my camera! I love taking photographs and documenting moments in my life and, as much as possible I have tried to do that since becoming ill. This is a huge chapter in my life and I need to capture it in order to learn from it. For example, New Year’s Eve, Brian Adams was performing on the TV and in a moment of, screw you alopecia, I got my very own Brian and Adams and documented the start of a new year with a bit of humour. I was ok with that at the time but I find it hard to look at those photos, really hard. I don’t want to see myself, similar to my issues with mirrors at the moment, the person reflected in the photos just isn’t me. In my head I’m still Hannah with hair and eyebrows and eyelashes with a bit of a tan and none of that applies at the moment so it’s a bit of a shock when I look at them. I really struggled with that task but my little bit of sunshine that I can take from it is that I’ve done it and I can now only build upon it.
I knew I was having a bit of a dip because when dad shaved my head on Sunday I was very aware that I was on the edge of tears and was squeezing my nail into my finger and biting my lip to stop myself. But, as always, mum could obviously sense something and was being supportive which tipped me over and I had a cry. But then, I did as I do (I realise I’m a bit of a sweep it under the carpet girl) and stopped and waited until I got upstairs to have a real cry. Normally I feel so much better after a good cry but I noticed a change this time: I didn’t feel better, I felt an overwhelming sense of anger.
I am so angry that I am in this situation at this stage of my life. I feel angry that I am not back in Dubai living the life that I should be living. I’m angry that I’m not planning my next set of travels that I had sorted in my head for half term and Easter. I’m angry that I’m not working and earning so therefore not saving so won’t be able to do some of the things I had planned for my return from Dubai. I’m angry that I’ve had to cancel plans this week for friends to simply come and spend time with me because I just want to sit in peace and manage the pain I’m in. I’m angry because it makes me worry that I’m pushing people away and might lose the connection I have with my friends, it’s all so isolating. I’m angry that I can’t face myself in the mirror or wear my wigs at the moment because the pins and needles and skin sensitivity is so bad and I’m angry that I was stupid enough to put my night cap in the drier so it’s now too small and keeps popping off my head in the night! (that was my little bit of sunshine amongst the real anger!)
But then, I’m also angry that I’m angry because in reality the situation I’m in is so less warranting of anger than some of the situations that other people are in. I feel angry that I’m home and that I can’t be the friend I would normally be to the people who need me. I feel useless.I hate watching my family come in from long days at work, tired, stressed and then having to do the cooking around me whilst I’m just sitting there. I feel like such a terrible burden. As and when I feel I can, I cook the dinner and do other bits and pieces but it just doesn’t feel like it’s enough – I miss being a busy bee and helping out.
I have tried to be proactive about the situation and most days, I promise, I’m more up than down because I am learning to kick my own butt and sort it out! Last weekend Dad took me to buy my own electric head shaver – every girls dream I tell you! I felt strong about it, I need to learn to shave my head so that when I go back to Dubai, I can do it and be in control rather than lean on others again.
But then, this week when it had grown enough for me to need to shave it, I couldn’t. I hadn’t thought of the process – to shave my own head I have to look in the mirror, not for a few seconds but for a long time – and I can’t. It sounds utterly ridiculous I realise that but that’s my reality. I can’t bear to shave off hair that I have managed to grow in order for it to fit in with the hair that just can’t be arsed to grow at the moment. So again, I know I will be able to one day but in terms of fight or flight, at the moment, I’m going to fly away from this situation and let dad (now known as Sweeney) resume his duties and continue to do a brilliant job.
I feel like we need a sunshine moment here…I found this and it made me chuckle, who knew I could resemble an egg..minus the eyebrows!!
I feel angry that there isn’t enough research into ME /CFS to help us more. My doctor has been amazing, I can tell she wants to help me but all she could do was hand me a 6 page hand out on CFS for me to have a read over and track my symptoms for change. I’m doing all I can to be pro active – I’m having reflexology once a week which really does make a difference and I’m taking all the recommended supplements and using the mixture of Bachs remedies that my wonderful friend sorted for me. I guess I’m just becoming impatient with it. I want my life back. I have to much to do, see and achieve in my life to let this stupid illness rule over me anymore. But what can I do?! So, in the meantime I need to make my own sunshine.
So – here are my pieces of sunshine from this week:
- Receiving some positive news about a most cherished lady who is seriously going through the mill at the moment.
- Seeing how strong and brave people are in such adverse situations and being able to feel so proud to call them my friends.
- My beautiful, yellow roses that are currently sitting on the dresser in the glorious winter sunshine.
- Being grateful for having a friend with such knowledge on alternative methods to help in difficult situations.
- Receiving yet another thoughtful parcel in the post which made my day, yes the gift was beautiful and I will treasure it but honestly, I got the most sunshine from feeling how lucky I am to know so many kind, thoughtful, brilliant people.
- Having a good laugh via text about what hats with hair I could purchase to make people laugh – by the way girls, rasta hair is not the way forward!
- Watching James Corden and Adele do carpool karaoke – genius.
- Receiving photos of my gorgeous godson and his brother.
- Taking advice from a book my oh so lovely brother got me for Christmas and thinking f**k it, I may not be earning any money but I’m going to treat myself to something other than wigs, hats and scarves and purchased a very quirky light box – can’t wait for it to arrive!
- Seeing that hair loss is having so much press at the moment to raise awareness – that makes me so unbelievably happy as hopefully it won’t be such a stigma in the future.
- Finding a cushion in a charity shop with mum covered in stamps with post marks for Swansea and Orpington! Made us laugh as when I go for my blood tests mum always makes a joke (she thinks it’s funny!) and stamps her foot and says loudly, “look it’s the STAMP ward again!”
- And finally, a little bit of sunshine, laughing at myself as I realise I’m more like my mother than I thought! When in Sainsbury’s after my doctor’s appointment, I witnessed some awful bullying of a special needs lady by a few staff. Not only did I complain in store but I wrote a letter to the manager – now if that isn’t Cath Green, I don’t know what is and you know what, that isn’t a bad thing in the slightest.
From following new people on Twitter and Instagram that suffer with ME and alopecia I’ve found it comforting that I’m not the only person to feel this way. By writing blogs that are totally truthful (which is really hard as I never know if that’s the right thing to do or not), I hope that not only am I finding a release for myself, that I am helping those people know that they aren’t alone either. I know that things aren’t where I want them to be at the moment and I know I’m allowed to feel annoyed and frustrated by it but as much as possible I am trying to find my own sunshine in each and every day because that makes it all a bit more bearable.
For Christmas I brought some friends and myself a gorgeous little book by Karen Salmansohn called ‘Instant Happy Journal’ which I am completing every day – making sure I write down something positive does help to let in the sunshine, her quotes are brilliant, follow her on Instagram – she’s fab: @notsalmon
So, new task for the week ahead is to let my own sunshine in but to also spread some, it doesn’t have to cost money – let’s see what we can do! Let me know if you receive or spread some sunshine and I will make up a little blog post about it; I think that hearing other people’s happy news always brings a smile to your face so let’s try it!
My sunshine to you is – happy weekend 🙂