My Freaky Year
It was about exactly a year ago that I first decided that the pins and needles that hadn’t gone away since I had been sitting in the hairdresser’s chair the day before was the sign of something ‘not right.’ It was the Saturday before Christmas. (Today is the Sunday before Christmas, one year on).
Over the next few days I kept pretty quiet about what was freaking me out. Everyone was celebrating their Christmases, Facebook was full of people being happy, being together. Unlike other Christmases that I’d chosen to spend alone, this one I felt isolated and lonely. And really freaked out. Looking back over Facebook posts, I don’t think I referred to my freaky feet until they were freaky legs too though, into January.
It didn’t start the Saturday before Christmas, of course it didn’t. It didn’t even start the week before, which the neurologist thinks was the first of these relapses, when my feet did swell to twice the size, were numb and cold as ice, and when I experienced a tiredness I’d never experienced before, not in all my years of PTSD hypo. When I was visiting my bestest friend and my not-niece, and saying hello to my newest not-niece too. And instead when I slept all weekend.
It probably hadn’t even just started when they think it was another relapse, when eight years or so before my left hand had gone so numb I couldn’t hold a pen, and the numbness and pins and needles again went all the way up my arm, and the doctor told me to go away, and the chiropractor who I paid privately to take an x-ray of my neck said I just had a trapped nerve and it would go away of its own accord in a few weeks to months. Relapses are generally supposed to go away of their own accord in a few weeks or months.
It probably started years before that. But the stalagmites and stalactites that are the lesions in my brain weren’t noticeable then. They were there, but in the deep end, showing up only as a slight clumsiness and the extraordinary ability to fall over in flats, on flat surfaces, and not-drunk. There’s a t-shirt I often see now on Facebook, it’s following me around – “I’m not drunk, I have MS.” Might have been useful to know back then. Maybe.
A relapse is supposed to go away in a few weeks or months. This one hasn’t. And so the considered medical opinion is that this relapse is here to stay. If it were not for that fact, we could probably call this version of relapsing-remitting MS ‘benign.’ Because whilst this relapse is difficult to decipher it’s most likely that what has seemed like progressive worsening over the year is just more of the same, and an acclimatisation to the meds, and not new. Which means I probably haven’t had another relapse this year, which is a really good thing.
[Another MRI will tell for sure. That’s due to happen before my next neurologist appointment in April. If the appointment comes through].
This relapse is also called Transverse Myelitis. Transverse Myelitis doesn’t need to happen due to MS, but it does more commonly happen due to MS. And it’s extremely rare, about 1 in one million people will get TM. About one in 600 will get MS. (About 100,000 people have MS in the UK). TM can show up as paralysis, so the fact that my version is only showing up as neuropathic freakiness also makes my MS ‘benign.’
This has been one freaky year though. Let me list the symptoms that I experience on a daily basis – not all of them at the same time, not all of them every day. But all of them. (Or not all of them. I bet I go to bed tonight and remember something I forgot to add here).
- Pins and needles in feet and legs, and recently in fingers and hands
- Numbness in feet and legs, and recently in fingers and hands
- Electric zaps, randomly across the body
- Pin pricks, randomly across the body
- Spiders and insects crawling randomly across the body, most commonly my thighs
- The sudden intense pain when a piece of clothing just skims a joint, most commonly my shins
- The sudden intense pain when touched
- Deep ‘headaches’ behind my eyeballs
- A vibration in a section of my scalp, like an insect is rustling in it
- Waking up from the fake remembered pain of my knee operation
- Pain in my left thumb, again the fake remembered pain from that operation
- The MS hug, the feeling of being tightly choked, wearing a too-tight corset
- MS itch, the need to scratch and scratch, but there’s nothing there (oh, my poor ankles)
- Feet that are so cold they feel like they’re on fire (my hands are starting the ice-route too, mostly in the mornings when I’m journaling)
- The sensation of walking on loofahs
- The sensation of walking on hot coals
- The ‘Parkinsons’ twitch’ of my right thumb sometimes
- Leg cramps and spasms
- Intense chronic body pain, as though you’ve just been punched in that spot and you’re still tense from it
- Random bruising
- Urgent bowel (yes, there have been accidents)
- Shy, yet frequent, bladder (terrified by what might come next)
- Memory loss, and replacing words – e.g. door for window, or using the same word to mean two things in the same sentence
- And let’s not forget the fatigue and tiredness and brain fog that is my everyday battle – and which I always pay dearly with for any day I try to prove doesn’t need to have those things in it by actually going out to live.
And the side-effects from the medication cocktail:
- Heartburn – so I have to take ranitidine everyday – I tried to stop it recently, big mistake
- Skin rashes that itch and itch (and make me wonder if it’s the MS itch too) – we haven’t found the right cream yet
- Fatigue and tiredness and brain fog – the gabapentin dose I’m on would put a horse to sleep
- Dry skin (although my hair doesn’t seem to get greasy anymore – does mean I get away with being a slob a bit more often. #silverlinings)
- And let’s not forget that every two weeks I have to have my blood tested, just to make sure the drugs I’m on to (hopefully, they can’t be sure) slow-down the progression of the disease and increase the gaps between relapses, doesn’t ruin my liver…
And the facts of living with something that is forever present, that could anytime get worse, in any unpredictable way, causing fears over the ability to live independently and continue into the next twenty or thirty years earning my own living. Staying sane and managing my anxiety and fear has taken up a lot of my energy this year. I am learning, but slowly.
It’s been a freaky year. I re-read my 2017 review, it was called The Year Dreams Came True. If only I’d known what was around the corner. In 2017 I put the business side of the business on hold to focus on my new job, and to get the ReConnected Life Community book ‘To Report Or Not To Report’ out. We were silence-breakers at the time silence-breakers were on the cover of Time Magazine. It was good timing. My formal diagnosis was on the Sunday; we launched the book formally at Westminster, hosted by my MP Layla Moran, on the Tuesday. And then I fell apart.
And I really fell apart. I am an extremely high functioning fall-aparter – this time I had learned the lesson of my PTSD years and I paced myself to do the falling apart in ways I could cover it up. My work suffered but perhaps only to my eyes. I did nothing except GDPR for ReConnected Life, but I kept Curious Decisions afloat. When some of you came to visit, and I let me guard down with the drink, then you saw that I was really not ok.
But I am also extremely well-practised in putting this Humpty Dumpty Girl back together. I went back to basics; I went back to my own teachings. I put back in place the rituals that gave me back my sanity back then, and the rituals I teach to others now. I started to listen to my body, to not try to hate it for it’s suffering, but to hear what it was saying to me; whenever there was any particularly sharp pain it was because of some kind of stress or worry that I wasn’t attending to. I listened. I took action. I took back control – and as this is a disease that is uncontrollable, that means I learnt to surrender and to accept and to be totally ok with uncertainty and an uncertain future. (Totally OK is maybe a reach – that’s the aspiration and the path I’m on).
This year my achievements are not many and inspiring, as they have been in other years. This year my achievement is still being here, still standing, in fact determined to still be thriving, with all the plans that 2018 was supposed to deliver for my business still intact, with new strategies for achieving them, and with new plans for a new pivot business too.
This year my achievement is that I have faced into the stormy life MS is gifting me, and I am not running from it as I was at the start, I am finding ways to dance with it instead.
My other positive highlights in this my year in review:
- The film I was in didn’t get a BAFTA, but it was nominated for one
- The press I achieved for ‘To Report’ included a piece in my first broadsheet for the Telegraph (albeit online), and a piece under my own byline for Stylist too – two wish-list items achieved
- I signed up to French classes, and loved them – next year might not have French classes (there are other learning things taking up my time) but I had so much fun and laughed so much; they were expensive, and I don’t regret a penny
- I finally finished the ink on my back. Well, when I say finished, there might be some tweaks, maybe some outlining in white around the kanji, and of course there’s always more ink in plan. But the back can be counted as finished for the moment
- I saw many films and plays, far more than I probably saw in the last five years put together (in not the right order, and maybe not all of them) – The Last Jedi, I Tonya, Cat on a Hot Tin Roof (both live, and then NT Live), Black Panther, saw Hugh Grant in Conversation with a lovely friend, saw Ruby Wax in Conversation with another lovely friend, Joan Armatrading live with the same lovely friend, A Star is Born, Mrs Dalloway with lovely friend, Bohemian Rhapsody, Widows, Love Simon, Deadpool 2, Nutcracker, The Wife, Mamma Mia Here We Go Again, Lady Bird, and more.
Some lessons in some of my lovely highlights:
- Don’t go to events where I have to sit on the floor – I’d never felt disabled before ‘Becoming Shades’
- Don’t go to events where I have to stand – my enjoyment of The Killers was definitely marked by standing on fire
- Don’t go on holidays to hot places and then decide to walk a lot. Definitely not up hills (nor volcanoes). MS gets worse in the heat, so someone who’s not good with heat anyway wasn’t going to have an easy time of it… Naples and Sorrento and Positano and Herculaneum were breathtakingly beautiful, seen through a red haze of pain.
- Don’t go to festivals where there is camping and any chance of cold. MS gets worse in the cold too. Ditto the walking, and the standing. Byline was amazing, but would’ve been more amazing if I hadn’t had to go home early.
- And the biggest lesson – if I’m going to do those kinds of things, do them with friends I know love me for me, so even if I feel I’m being a burden, I know I’m not. (Thank you, you know who you are).
My biggest lessons in living this Freaky Year:
- Pacing is key
- Self-compassion is critical
- Hope still has a powerful place at the table, even for a disease supposedly incurable and here to stay – CBD oil might be a miracle and I’ve already reduced my gabapentin dose by 25%
- Loneliness is real, and connection vital
- The rituals to keep hold of sanity must never be compromised
- Exercise, even just light stretching, is not for fitness, it is for maintaining independent living
- Work might cause stress; stress must be avoided, so stress at work must be minimised – let go
- Living without gluten and cow’s dairy is pretty easy at home, less easy when eating out
- Not drinking is better for me than drinking is enjoyable. This experiment will be continued some more into 2019
- “Yes, this too” is a surprisingly powerful mantra for accepting surrender with calm, grace, and humility (credit to Tara Brach)
Next year I plan to make many changes, for me personally, as well as for my businesses. The end of next year should deliver a very changed life. It will be challenging, and busy, and full of too many balls I’m insisting I juggle. I’ll fail at some things, and excel at others. I’ll cry. I’ll laugh. I hope I’ll love. And through it all, I shall be dancing the dance with my lesions showing up their battle-scars as they will. Bring it.
Thank you for reading xx