It’s fair to say that in the last couple of years, Eldest Mudlet has, relatively speaking, been to hell and back but she has emerged a stronger, more confident individual, determined to grab hold of her life and live it the way she wants to. I’m not saying that every day is a good one for her but she’s better able to manage the bad ones now and I believe that the good now out weigh the bad and she is, for the most part, happy with her lot and striving forward.
That’s not to say of course that a lotto jackpot win wouldn’t be gratefully received, or the attentions of an eligible bachelor for that matter but then she is only human after all.
I have written this post with her full knowledge, permission and participation, in the hopes that it may bring a little more awareness of a rare and life changing condition and so without further ado, this is Eldest Mudlets’ story, told, for the most part, in her own words.
It was back in July 2013 that Eldest Mudlet began to experience the first odd symptoms that signified the start of her health issues:
“On a Friday afternoon at work I noticed my left hand side felt tingly & uncomfortable, no matter how I shifted position or weight, it wouldn’t go. I thought not much of it and even though I still felt a little weird on the Saturday morning, I ran the Leeds 10K (walked most of it). That afternoon the tingling “numb” sensation got worse and I tripped up at home because of it. I rang 111 who sent an ambulance (they  exaggerated telling them that I was numb and unable to walk). I was taken to A&E because my vitals were high (probably because 5 minutes previous I’d been told I was having a stroke) where I was instructed, by a Dr, that I needed to see my GP and ask for a neurology referral.”
As she later found out, this was the first indication of an attack and although the symptoms were only quite steady, after the initial onset they very gradually got worse.
Eldest Mudlet continues: “The problem went on and over the following week or two got worse. I would feel numb/tingly on my left side and my limbs felt heavy. I got a funny sensation in my stomach, like a tight, banding feeling, but only in the left side. The feeling is quite similar to when someone “electric shocks” you by prodding your ribs. It was worse in my lower abdomen/back and leg but I found that I would drop things out of my left hand easily.”
Obviously, as the symptoms got progressively more pronounced, worry set in and she eventually went to see the GP as instructed. In my experience, visits to the GP as a woman, almost invariably result in a question and answer session about monthly cycles, the vagaries of which are blamed for a multitude of sins and whatever symptoms you happen to be describing. Thankfully, on this occasion, Eldest Mudlet found herself talking to a doctor who took her concerns seriously:
“I can’t sing my GP’s praises enough,” she says, “I had booked a single, 10 minute appointment but the examination took at least half an hour. The GP in question was very reassuring advising he didn’t think it was anything too sinister but definitely felt it needed further investigation.”
One of the hardest things that Eldest Mudlet had to deal with was the fact that no-one around her seemed able to understand what was happening to her and, to be fair, she was having a hard time dealing with it herself:
“At the time I was very stressed and it was difficult because I barely believed myself. Neurological symptoms are by nature extremely difficult to explain and are easily believed to be “made up” because people can’t see or understand them. If you think of being tickled or itching – what sensation would you describe it as? No one really can explain it but technically, it is a form of pain. The sensations I feel are extremely uncomfortable but not traditionally “painful”. People close to me struggled to understand this and I found that hard.
By the end of some days I would feel as though my left side had run a marathon because my limbs were so heavy, I wouldn’t want to eat because of the banding feeling around my stomach and something as little as the washing information tab on my shirt tickling my back, could set off a flare up– my partner at the time, work colleagues and friends didn’t really understand.
Neurological illness, by its very nature is “in your head”. Painkillers don’t help, sitting or standing doesn’t help, sleep does occasionally help but not often”
With symptoms beginning to affect her everyday life and the uncertainty of what was actually wrong, the one thing she really needed in her life at that point was stability but October was to prove very traumatic when her partner of 3 years, called time on their relationship and they went their separate ways. In his defence, this decision was not as a direct result of the still (at that time) unknown illness but rather an accumulation of many things but the timing was lousy and Eldest Mudlet pretty much fell to pieces. Thankfully, her friends rallied around and together with almost hourly texts from me to check she was okay, she made it through a difficult couple of months both in terms of her personal and her medical life.
But the uncertainty of what was actually causing these irritating and debilitating symptoms, was weighing heavily on her mind, especially as she waited to see the Neurologist:
“I was quite frightened at first, to be honest even from seeing the GP – I knew from the outset that they were looking for MS even though they didn’t say so. I knew I had to have an MRI scan, which I was terrified of. I have a real fear of MRI machines so in some ways that was fortunate as I focused more on fearing that than my results.
Both my GP and Neurologist carried out a Neurological exam which consists of many tests such as closing my eyes and keeping my hands at the same level, pushing/pulling limbs away from force, reflex tests etc there was one that I hated that uses a teeny tiny needle and the Dr would press against my skin to find out where the sensations were. One symptom of my illness, is increased sensitivity and things like that needle are EXTREMELY uncomfortable (hence the clothing tab mentioned above).”
Of course, Eldest Mudlet had chosen to keep the spectre of MS from me, thinking that it would stop me worrying as much …… which it didn’t. She fed me small snippets of information, aimed at appeasing me but as her mother my gut instinct was screaming that she wasn’t telling me everything but I made the decision to be as supportive as I could be, based on what I knew, rather than nag her too much for details she very obviously didn’t want to share at that time.
That said, no matter how old you are, sometimes you still need your mum and so it was with Eldest Mudlet – which is why I found myself, one cold February afternoon in 2014, sitting in the waiting area of Hull Royal Infirmary, whilst my first born child had her scan. Half an hour later she joined me in good spirits, pleased that particular ordeal was over but it was going to be another two weeks or so before she got the results of the scan and she continued to worry in silence about the possibility of MS. As it turned out the MRI didn’t show signs of MS but, as Eldest Mudlet explains, the lack of signs of MS meant that the doctors were able to diagnose another neurological condition, Transverse Myelitis (TM):
“The period between the MRI and the results was like a perverse version of waiting for your exam results and although the MRI wasn’t conclusive of TM, the symptoms were. Had it been MS it was a very high probability it would have shown up on the MRI. I was offered a lumbar puncture, to 100% confirm the diagnosis but I didn’t want to go through that and the neurologist didn’t think it was necessary if I didn’t want it. I was made aware at the time that TM can be the first symptom of MS but the Dr was sure this was not the case in my attack.”
The initial relief that I felt as her mother when MS was ruled out, was soon replaced by horrified shock, when I researched just exactly what TM was. Transverse Myelitis as defined by the NHS is:
‘inflammation of the spinal cord. It causes weakness in the arms and legs which can range from a mild ‘heavy’ feeling in one limb, to complete paralysis in all four limbs.
It may cause numbness, tingling or burning below the affected area of the spinal cord and increased sensitivity to touch, cold and heat. There may also be tight and painful muscle contractions (known as tonic muscle spasms).’
I have to admit that I had never heard of TM prior to Eldest Mudlets diagnosis. It is a rare illness and as such is pretty much unheard of, receiving little if any media coverage. There is however a support group called the Transverse Myelitis Society which offers support to sufferers and their families and their website has provided me with a wealth of information about the illness and current research.
As a mother you want to protect your child from every conceivable harm that may come to them during the course of their lives but every now and then, you are dealt a curve ball and you have to face the realisation that sometimes, the only thing you can do is offer unlimited love, support and reassurance, metaphorically holding their hand, patting their back and uttering words of comfort. As I read the NHS description of the disease that had attacked my child, I realised that this was one of those times and I watched helplessly as Eldest Mudlet went into a freefall towards depression, as the enormity of her diagnosis hit home.
Of her depression Eldest Mudlet says: “I blamed it on a lot of other factors and it was only thanks to the aforementioned GP that I realised I was struggling with coming to terms with the diagnosis. I went to him miserable and blaming lots and lots of things, he questioned me about those things and casually moved onto the illness and diagnosis. He then told me he didn’t think I was dealing with it or adjusting as well as I could be. The understanding of the GP was amazing. Since the diagnosis I have refused to focus on it and feel sorry for myself because I got off very lightly compared to most other TM sufferers. Speaking to my GP helped because he pointed out all the ways it had effected me and reassured me that physically I was coping very well but that I had every right to feel sorry for myself for a little while. Thanks to him I realised that I was in denial and made a real effort to start admitting how I felt physically to others and to tell friends and colleagues that I was ill so they could help and understand. A big part of the recovery was helped by not trying to hide the symptoms! I still refuse to wallow in it but I can admit to having it (even though I don’t really like to).
Since my initial attack, I have been left with the feeling of heavy limbs, decreased sensation in my hands/feet, unusual sensations such as tingling, shooting sensations, occasional “burning”, fatigue, increased sensitivity (especially in my lower left back), banding feeling around my stomach.”
Despite her symptoms, Eldest Mudlet is determined to live her life the way she wants to, although 10k fun runs are out of the question …… at least for now. She has found solace and salvation back in the company of her first love – horses – and in particular in the company of a little black and white cob mare called Gypsy. Gypsys’ own need for someone to care for her has helped Eldest Mudlet focus on other things, as she worked to gain the trust of the not so little pony that no-one could catch, the same pony that now runs to the gate when she hears my daughter call her name.
As she explains below, being in the stable yard poses its’ own challenges for Eldest Mudlet, as fatigue sometimes makes something as simple but important as filling water buckets a marathon task all on its’ own but the pay off is the joy she gets as she rides Gypsy out on hacks, or schools her in the paddock and she even got her to jump for the first time the other day.
“Since the attack running is uncomfortable anyway as I get really bad tingling & numbness in my foot when I exert myself. I carry less things in my left hand as otherwise I spill and drop things.
Since my diagnosis I have gotten back into horse riding and at times it can be challenging to work around my flare ups – I almost always struggle with knowing if my left heel is up/down, in the right position because although it isn’t completely numb, the sensation is dulled and furthermore by my boots/wellingtons and I find horses I ride often drift to the left, I think this is because I feel as though I am exerting even pressure on the reins when really I am “pulling” more with my left to compensate for the unevenness in sensation – I am learning how to balance this out now but it is a big learning curve, and I have to concentrate more on those things than I’m used to. In winter it could be uncomfortable in regards to temperature in my left foot feeling weird and uneven.”
A few months after she was diagnosed, Eldest Mudlet was made redundant but even this episode couldn’t dampen her spirits and she remained upbeat because as she says:
“It was definitely best that I left but what helped was the support I received from friends and colleagues to get through everything. The time away from work to enjoy my horses, to model abroad and accomplish amazing things pulled me out of my rut. I made some amazing friends at my stable yard that I’d never had chance to speak to before because I didn’t have time and reconnected with old friends.”
At times I feel that my child is still struggling to come to terms with the limitations that her illness imposes on her when she least expects it but she either strives to find a way to compensate, or, if needs be, she adapts, listens to what her body is telling her and takes some time out. I am so very proud of her and all that she has achieved in the last 15 months or so.
Thankfully, over a year on and as well as the joy she finds in her modelling and riding, she has found a nice job in, of all places, a doctors surgery which in terms of understanding and sympathetic colleagues and bosses, is fantastic really but then that works both ways.
“Does anyone here have an illness I can test the student doctor on?” one of the doctors asked a month or so ago, probably expecting asthma, hayfever, diabetes or some such relatively common thing.
“I do!” Eldest Mudlet said ………