I was diagnosed with relapsing remitting MS in 2012. Shortly after my diagnosis I suffered a relapse that caused numbness in my right hand. I lost control of my fingers and even holding cutlery became impossible. I thought that my life as a textile maker was over.
When I was a child my mum kept her sewing things in my bedroom and I remember delving into the drawer to take scraps of fabric to create blankets for my dolls. Meanwhile Nan would make me doll’s clothes. She was from the make-do-and-mend generation and every little scrap would become something beautiful at her hands.
Following school I studied Woven Textile Design. I loved learning a traditional craft. I graduated in 2007, and without equipment to be able to weave, I taught myself how to sew. When I lost the mobility in my hand the thing that I loved the most became an impossible struggle. I persevered and adapted how I worked. Hand sewing was out of the question so I took up machine embroidery. As time has gone on and my mobility and coordination has improved, thanks to the practice my hand gets from manipulating cloth and threading needles, I have gained so much confidence, in my craft and in myself.
To sew is such a joyous thing to do, needs little space and is done sat down, concentrating, being mindful and having a focus. I believe that being creative allows you to learn and reflect. If you have a spark of interest - just try it.
Textiles are forgiving. You can get tools to help thread your needle, frames on stands with lights and magnifiers and if it doesn’t work out how you’d planned, there’s nobody to judge you.
To me textiles is about identity. I’m not Anna, that woman with MS. I’m Anna who made the skirt she’s wearing. It connects me with life before MS, to my mum and my nan - my biggest influences - and it brings me closer to the people I love the most when I make them things. It’s my passion and it keeps me going. Just one stitch is progress.
Two of my biggest symptoms are fatigue and concentration issues. You know that thing when you walk in to a room and forget why you are there? Well I do this time and time again. I have started to write everything down. My husband often laughs at my old fashioned note keeping, asking me why I won’t do it on my phone. But I find if I can’t see it in front of me, it ceases to exist. So I write my to-do lists, I pace myself and I try to take one day at a time.
I have always enjoyed baking, but in the last six years or so I have started to push myself in what I do, trying new things, making elaborate decorations and baking things that I have never even heard of before. You can probably blame The Great British Bake Off for a lot of it, watching that show and the amazing people on it made me want to make amazing-tasting showstopper cakes as well!
People often ask me how I find the time and energy to bake. I guess the secret is that I love doing it and I really find it helps me deal with life. If the day has been particularly stressful and hard, I like escaping reality by baking, as in order to concentrate on what I am doing, I have to let all other thoughts go. Sometimes I follow a recipe that I have found, sometimes I have to modify it, and I often sketch up a picture of what I’d like to try and achieve.
Sometimes baking takes it out of me, then I have to give it a rest. Either I get a chair and sit down whilst I do it, or I simply put the dough away to continue another time. If I am doing a big cake, I bake the sponge, stick it in the freezer and then do the decorating part another day. Doing it all in one go very rarely works because of the fatigue. But again, planning it out this way and having a schedule about what I will do on which day is probably very good for my ‘brain exercise’.
My advice for anyone with MS is to find a hobby that they like, adapt it so that it suits you and enjoy pushing that brain a bit extra.
I was diagnosed with secondary progressive MS in January 2014. This was quite a shock, particularly as I wasn't aware that I had had relapsing remitting for the past 30 years or so! Once I had gone through the ‘grieving’ process I just got on with life. I was working full-time at this point. I can walk with a stick for a limited time, about 15-20 minutes.
A flyer came through my letterbox advertising Rock Choir. This sounded like a fun thing to do but unfortunately the local session was held on a Tuesday morning. Work commitments made this session impossible, and the next nearest was held in the evening. This was no good to me as by the end of the day I was knackered!
I retired in June 2016 and decided to have a Rock Choir taster session. There are no auditions and no need to read music. Just as well as I can only just hold a tune! I entered a room full of chattering, laughing people, mostly female, although there were a few men. I was welcomed, helped to find which harmony part to try, and the session started. I was seated next to Wendy who chatted away to me, helped me by prompting what and where I should be singing. They were rehearsing for a performance at Nottingham Concert hall which involved six songs. The sound was amazing - that was it - I was hooked.
I have now been a member for three years and it has been the best thing I have ever done. I was accepted as me, made so many friends and have had so many amazing experiences. I have performed (performing is optional) with the choir at several local venues, the first being at Kedleston Hall for a Christmas fair. I was nervous but everyone was encouraging and supportive. It was magical. I have been part of a flash-mob, which my grandsons thought was "awesome" and, with the support of other Rockies during the journey to London, I have recorded at Abbey Road.
Rock Choir has gained me new friends, helped enormously with my confidence, my posture and my breathing. Most importantly I leave each session uplifted and glad to be alive. At each session I can forget that I have MS and just be me. I would encourage anyone to give it a go - what have you got to lose!
I received my diagnosis of relapsing remitting MS in May 2017 at 28, after five years of symptoms. I used to ride motorbikes from the age of 15 to 19, but then stopped because I couldn’t afford it, especially once I became a dad. I had a bad relapse towards the end of 2017 where I lost the feeling from my waist down and that really scared me. It got me thinking about all the things I hadn’t yet done in my life and I was determined that no matter what, I would get my licence.
Once I had come out of my relapse I went to my local training school (Kent Motorcycle Rider Training) and booked my training in, advising them of my MS and how it affects me. One of my main battles is fatigue and even though riding the bike brings my body back alive, the training was a lot to take in. But my instructors were great and allowed me to take a break whenever I needed to and gave me lots of confidence. I took my test and passed with a couple of minors. I was on the road.
The thing I love most about riding a motorbike is the feeling of freedom and normality. A lot of times in my life I am looked at differently when people hear about my MS. When I have my helmet on nobody knows who I am or what is going on with my life and I am just free, whether I am doing seven or 70mph. I would 100% encourage others to try it. I was once told “if you don’t use it you’ll lose it” and I am not having my freedom taken from me.
For the past eight years I have been studying traditional embroidery with a tutor from the Royal School of Needlework. It was early in my studies, during two separate month-long goldwork courses that I had my lumbar puncture, first MRI and subsequent MS diagnosis. It was really good to be able to switch off from all of that and just focus on my technique and stitches. Since then, embroidery has evolved from simply being an interest to a desire to become highly competent.
I use daylight bulbs, LED lamps and, since my last relapse affected my eyes, a large magnifying glass. When my fingers are numb, I use rubber thimbles which help me grip my needle. I opt for longer than usual needles so that I can use more fingers to hold them. I can do all the work myself but with weakened fingers I just need help stretching fabrics onto their frames.
In the autumn of 2017, when I was severely ill, I was still able to complete my first restoration project which was of an 19th century altercloth. My body was in a lot of pain but my brain was unaffected. To embroider I simply needed to sit still and concentrate.
When working on a piece, there are bits that require your full attention. But there are other areas of monotonous stitching. When I am tired or have brain fog, these areas are just prefect. The focus is all in each stitch being right but you don't have to think about it. You can simply switch off. I can be completely absorbed in my work for many hours at a time. My most recent work was a whitework piece I did in February this year for a charity auction.
When my MS is compromising so many of my day to day abilities, studying embroidery has given me a new found inner confidence.
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