Hey! Wassamattawitchoo?!

I’ve been asked what ailments I have, besides MS, so I thought I’d blog about it, as I can go into more detail here.

Let me start by saying I’m very overweight. It’s something I’ve battled my entire life and have yet to overcome. I went on my first diet aged 9, after having a battery of blood tests to see if my increased weight was caused by an underactive thyroid or some other hormone imbalance (it wasn’t). I’ve been on various diets over the last 30 years or so. I managed to lose a significant amount of weight in 2009, but between physical and emotional issues, I managed to gain most of it back again. My weight is not the cause of any of my ailments and I don't suffer from any weight-related conditions, such as diabetes, but being overweight doesn't help with the physical side of things.

When I hit puberty I started to suffer from headaches that lasted for days – even weeks at a time – and didn’t respond to aspirin or paracetamol. I visited my GP, who told my mother and I that a) it was my age, b) my hair was too heavy, I should cut it and c) it was eye strain from all the reading I did. My mother allowed me to cut my hair, I got reading glasses, but the headaches persisted. My GP gave me various pills to try, but none of them worked. She retired when I was 14 and her replacement labelled me a hypochondriac, and this was how I was viewed until my 20s, when a locum with no preconceived ideas diagnosed me with tension headaches. She prescribed beta blockers and the headaches vanished. However, my own GP was appalled and refused to issue a repeat prescription, so the medication stopped and my headaches returned.

I continued to suffer with the headaches until I changed GPs and asked to be prescribed beta blockers again. My new GP was much more progressive and open-minded and readily agreed. The headaches went away again and everything was fine on that front.

When I was 20, I had an accident – a daft accident, where I was running upstairs, caught my foot on one of the treads, fell forward and put my hand out to break my fall. I staved 2 fingers and wrenched my back. I went to see my GP (the one who didn’t agree with beta blockers) who prescribed bed rest for my back. This was 1990, when that was the conventional wisdom on how to treat back injuries. We now know that gentle exercise is the best remedy for a pulled muscle, but things were different back then. My fingers healed relatively quickly (thankfully, as I was typing for a living that year), but my back was injured for over 3 months. It only got better when a friend took me out dancing 2 nights in a row. I was ecstatic that my pain disappeared overnight, having suffered for so long.

However, I was left with a weakness, which means my back goes into spasm without warning. I never know what will set it off. It’s usually something mundane, like tying my shoelaces or putting on my socks. It’s rarely caused by lifting something heavy. Twisting and turning are the usual culprits and my back has caused me a lot of pain over the years. I get regular massages to help keep me limber and I did Pilates for a while, which helped somewhat. That being said, my job doesn’t help at all, as I sit at a computer for 8 hours every day. When I’m off work I rarely have any bother with my back, but when I return to work after a holiday, or a bout of illness, I find that the first day back, come lunchtime, my back is already stiff and sore. Sitting all day has to be one of the worst things for your back.

My back did improve a lot when I lost weight. I know that my weight puts a lot of strain on my back and I wish there was an easy solution to my weight problem, but there isn’t. I don’t really want to talk about my weight, as that’s a separate issue which, while it does impact on my health, isn’t the main cause, as I’ve said.

I suffer from hypermobility in my joints. As a child I could put both legs behind my head. This ability went as my weight increased, but I was still pretty flexible. I could touch my thumb to my wrist and do other little things that come with hypermobility. I was also very prone to spraining my ankles. I’ve never broken a bone (yet), but I have sprained my wrists, elbows, knees and ankles on numerous occasions. My friend’s son has similar issues and was recently diagnosed with mild dyspraxia. Looking at the symptoms I’m fairly certain I have the same condition. It doesn’t affect our intelligence, but we have a lot of the physical symptoms that comes with the disorder. My friend’s son sprains his ankles all the time and grosses out his mother by contorting his limbs into positions they really shouldn’t go.

All of these sprained ankles have taken their toll. When I was 30 I sprained my left ankle in the May of that year. I was in a meeting and my foot had gone to sleep. I stood up and went over on my ankle. Voilà, one sprained ankle. I took up Salsa dancing a few weeks later. At first it wasn’t a problem – dancing was fun and I lost a bit of weight. I was bitten hard by the Salsa bug and started dancing 3 or 4 nights a week. After a few months I found myself in a lot of pain the day after a class and I hobbled when I walked.

I visited my GP, who referred me to the physiotherapy department. There, I was told that my body had ignored my sprained ankle and I was still carrying the injury 5 months later, which was the cause of all my pain. The physiotherapist gave me ultrasound treatment to encourage my body to heal itself, strapped up my ankle with tape and told me to stop dancing, which I did. This was very hard, as I loved Salsa so much and I was pretty damned good, even if I say so myself. The men would regularly ask me to dance, even though I wasn’t one of the slim, pretty ones, as they knew I’d give them a good dance. Women came up and complimented me on my dancing and even asked for tips. The teacher often used me to demonstrate new steps. I loved Salsa, so it was hard for me to give up my new passion.

After a couple of weeks my ankle felt better, so the strapping came off and I returned to Salsa. However, after only a couple of weeks my ankle started to hurt again, as badly as it ever had, so I went back to the physiotherapist. She was very angry and gave me a proper telling off. “I told you to stop Salsa dancing!” “I did! My ankle got better, so I went back to class.” “No, you don’t understand. Unless you want to end up completely crippled you have to stop dancing – forever!” Well, that was a devastating piece of news. I’d never enjoyed anything as much as I enjoyed Salsa, so I felt utterly crushed that I had to give it up for good. But I didn’t have a choice in the matter.

The physiotherapist referred me to the Biomechanics clinic, who took casts of my feet, then issued me with orthotics for my shoes to make walking more comfortable. The clinic has an 85% success rate with their patients. However, after more than a decade, the clinic has had to admit defeat and I fall into their 15% failure category. Because of my hypermobility and repeatedly spraining my ankles over the years, my ligaments have become overstretched and no longer hold the bones of my foot in place properly. As a result, my bones dislocate on a regular (daily) basis, which is very painful. I'm in constant pain and I hobble when I walk. Their investigations also uncovered the fact that I have compression of the lower 3 lumbar vertebrae (L3 - L5), causing my left leg to be 1 inch longer than my right and a slight curvature of the spine. Years of compensating for this has had a knock-on effect on my right knee and hip, as well as my back. Because I’ve been walking awkwardly and not distributing my weight evenly, I have wear and tear on those joints. Sitting all day doesn’t help either, as my joints tend to seize up. And, of course, being heavy puts even more stress on my joints.

My feet did feel better when I lost weight 3 years ago. I know that losing weight, while not a cure, would certainly alleviate many of my ailments. Unfortunately I battle with compulsive eating and depression, so it’s not straightforward. I have asked for counselling, but the service was discontinued because of cutbacks in the NHS. My GP’s advice was to join Weight Watchers. I’ve been there, done that. It wasn’t the answer for me.

In summer 2010 I got pins and needles in my hands. It was a Saturday – I remember it clearly. They persisted and on the Sunday they spread to my feet. I was doing a grocery shop and suddenly I felt like I’d been sitting on my feet. It was very odd. Over the next few days the pins and needles spread to the rest of my body – everywhere except my face. My back, then my chest, legs and, finally, my scalp were all tingling, like a mild electric current was coursing through my body. I visited the doctor, who ran blood tests, but apart from slight inflammation (which they expected to find because of my back and foot problems), there was nothing to indicate what the cause might be. They did neurological tests, but I passed with flying colours. It was a mystery.

The symptoms persisted for weeks. I was going to Zumba twice a week at this point and, during one class, my arms and legs suddenly felt like they had lead weights attached to them. It wasn’t gradual; one minute I was wafting my arms like a graceful ballerina (*cough!*) and the next I couldn’t lift them above shoulder height. Back I went to the doctor to report this new symptom. I saw 6 different GPs in total. None of them had an answer for me.

At the end of September my left eye became very sore. I thought I’d pulled a muscle, as it only hurt when I moved my eye. I started turning my head instead of swivelling my eyes to minimise the pain. After 2 weeks or so I noticed my vision had deteriorated. It was as though I was looking through swirling smoke that wouldn't stay still. I went to the optician, who said he couldn’t see anything wrong. That was on the Tuesday. He said to leave it a month and to go back and see him again if things weren't any better. My sight was at stake, so I wasn’t going to wait 4 more weeks to get the problem sorted. I made an appointment with the doctor for that Friday. In the meantime I Googled my symptoms, which suggested I had optic neuritis, an indicator of multiple sclerosis, which could only be verified with a MRI scan.

When I saw the doctor on the Friday he offered me painkillers. I said, “I’ve got a bathroom cabinet full of painkillers. They’re not going to help my sight.” He folded his arms and said, “Well, what do you want me to do, then?” I said, “I know doctors don’t like Google, but I’ve looked up my symptoms and everything it suggested it might be needs a MRI to diagnose conclusively.” He said, “Well, I can’t justify the expense of a MRI scan, so that’s not going to happen,” at which point I burst into tears.

I’m not the type of woman who cries for no reason, nor can I cry on demand. Luckily this particular GP knows me fairly well. His attitude changed immediately and he said, “Look, it’s 5pm on a Friday, I can’t do anything right now. Why not leave it over the weekend and I’ll call you on Monday at lunchtime to see if things have changed.” I agreed and he was true to his word. He called at 1pm on the Monday, by which time my eyesight had deteriorated. He arranged an appointment for me at the Eye Pavilion the next day, where I was seen first by a nurse and then by the consultant. The nurse couldn’t see anything wrong, but the consultant dilated my pupils and said he could see swelling in both of my retinas. He referred me to the Neurology department at the hospital the very next day, where I underwent a CT scan and a lumbar puncture (not a pleasant experience).

I was formally diagnosed with MS in February 2011. According to my consultant, after looking at my medical notes, I may have had the condition for at least a decade. I’ve experienced random bouts of pins and needles and extreme fatigue on and off for years. I was always told by whichever GP I saw that it was a “virus” and, as it usually passed after a couple of months, I accepted that. Sadly, that’s not the case.

The worst thing about MS is the tiredness. No, tiredness is the wrong word. Fatigue is more than that. Imagine walking for 10 or 20 miles (however far you’d have to go to completely exhaust yourself), then staying up for 3 days straight. Then imagine being told you have to go and put in an 8-hour shift in the office before you’re allowed to sleep. That’s every morning when I’m having a particularly bad bout of fatigue. I get so annoyed when someone asks me what wrong and I tell them I’m tired (MY tired, not normal tired) and they say, “oh, I know what you mean, I’m knackered(!)” I want to scream in their face that they have NO IDEA what it’s like. But I don’t, I just keep my mouth shut, as it’s pretty pointless. They don’t and won’t get it. Losing my temper will only upset me and make me more tired. Ignore it and move on is the best thing I can do. Sadly I had to give up Zumba, as I just didn’t have the energy required for the class. I miss Zumba – not as much as Salsa, but a lot.

Nobody understands how the tiredness feels, even those I thought would. I think that I’m the only person who can understand how I feel, just as you, dear reader, are the only person who can understand how you feel. Others may empathise, but they will never completely understand however hard they try. I just don’t think it’s possible without inhabiting the other person’s body. Walking a mile in their moccasins doesn’t quite cut it, I’m afraid.

As well as the fatigue I suffer terribly with dizziness. In October 2011 I came over all peculiar while walking upstairs at work and nearly fell backwards. Since then I’ve taken the lift at work for safety reasons and I avoid taking the stairs anywhere else as much as possible. This hasn’t helped my weight problem, as my activity levels have been drastically reduced. I’ve been taking medication for the dizziness since February, but it doesn’t help very much and I still have days when I’m too dizzy to consider driving.

My headaches returned with a vengeance in March. The medication stopped working all-of-a-sudden, so my GP doubled my dosage. This has helped the headaches, but the medication has triggered my asthma, which I’ve never been bothered with before. Now I’m wheezy a lot of the time and have to use my inhaler nearly every day, having rarely used it at all in the past. I’m also taking an antidepressant, as I was finding the rest of my symptoms overwhelming.

I’ve had to take a lot of time off work because of my various symptoms. I count myself lucky that I work for a very understanding boss and a very flexible company. I’ve been given the facility to work from home, which I did today for the first time. I haven’t been sleeping well recently and this morning I slept through my alarm and woke with a terrible headache. I was grateful to have the option of working from home, rather than taking yet another sick day. And it went really well. I had no interruptions and was able to listen to the radio, which made the day go quicker. I might work from home more often.

Most of this post is a bit doom-and-gloom, but things aren't so bad for me. I know there are people in far worse positions than mine, people whose employers aren't as helpful as mine or who can't work at all. I wrote this blog mainly to give others an idea of what I'm dealing with, especially those who might have decided I'm a bit of a whingebag. I don't deny that I am, but I hope you realise I have cause. I'm not good at playing the brave little soldier, I find it better to get things off my chest. I hope this has answered any questions you might have but, if not, feel free to ask.