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Janice's story

Read Janice's experience of acute disseminated encephalomyelitis (ADEM)

This story was first published on our website in 2012.


In hindsight, I’d had symptoms for a long time before my diagnosis. I had problems on and off for 30 years with numbness in my limbs and there was also some nerve pain, but nobody picked up on it to any extent.

In August 2010 I had a bad back – a traditional, ongoing problem for me, but nobody could ever quite do anything for it. I also had an infection in my foot – a blister that wouldn’t heal despite antibiotics. My podiatrist told me I would have to do something about my bunions and at the end of 2010 I had 2 bunion operations within 6 weeks of each other, which were really painful. Around the same time I also had a facet joint operation for my back pain.

After the bunion operations I was on morphine and felt very weary. I had pushed myself too hard, perhaps. Around that time I went to a football match and got very cold, and I never recovered (but we won the match!). I became generally very unwell so I went to my GP and said, “I’m not well, but I can’t tell you what’s wrong.” As time was passing I began to lose my cognitive ability.

A brain issue

In the end, because there was no improvement to my cognitive problems, my husband took me back to the GP and from there I was taken to the general hospital. There, they knew that I had a brain issue but weren’t sure what to do. They did try treatments for an encephalitis-like illness, essentially promising my family I would be OK in a few days. My husband and sons were determined to make sure I got the best treatment and eventually the doctors were reluctantly persuaded to send me to a specialist neuro hospital. That was a very fraught time and I know it was much harder for my family than it was for me – it’s easy to be the person who is ill.

I was admitted to the neuro hospital late on the Thursday night and on Friday they had a look at me, doing a lumbar puncture and various tests, asking “Who’s the Prime Minister?” (“That pasty-faced guy who’s sold out!”, was my answer, referring to David Cameron). By then they had a fair idea what might be wrong and started to treat me with steroids for ADEM (acute disseminated encephalomyelitis, a condition that involves inflammation and damage in the brain and spinal cord). Later on the Friday, an MRI scan confirmed that diagnosis.

Confusion can be a symptom of ADEM, and while in hospital I was convinced at times that I was pregnant. I was over 50 at the time, but I had been pregnant exactly 30 years before. I also kept asking my sons how they was doing at school, when in reality they were grown men. Everything I was remembering was factually correct but in the wrong time zone (I learned later that this is called “confabulation”), and that was crucial in my diagnosis.

Doing really well

By Saturday the improvement was startling. I could speak to people, and I could understand the football scores that my sons told me about when they came to visit. By Sunday I felt like a human being again – something was back. On the Monday I felt I was ready to go home. In the end I was in hospital for a week before they let me out for a weekend “on parole”, with checks to make sure I was doing OK. Going back home is a reality check, and some people find that they can’t cope the way they thought they could. But everyone said I did incredibly well and I got home permanently after 12 days.

After I returned home from hospital, the physical damage started to emerge – having been masked at first by the fact that I was recovering from surgery. After a week my walking was slowing, balance was difficult and my eyesight was impacted. After 59 days I went back to hospital for another 2 weeks, on more steroids.

In medical terms I’ve done very well. My rehab team say I do tremendously well, but trying to run my house and walk my dogs is always difficult and at times impossible. I am lucky to have had my family to support me, and to be intelligent and adaptable so that I could overcome a lot of my cognitive difficulties. Now, conversation is fine, although I have more problems with writing. Most of my cognitive ability has come back to me but I do feel totally changed now. A lot of the time I blag my way through.

Follow-up scan

After 6 months I had a follow-up scan. My original scan, before treatment, showed massive areas of white on my brain where there was active illness. This MRI, 6 months on, showed how well I had responded to treatment, with no glaring white areas, but grey patches and spots meaning no active disease, but damage. Although there had been an amazing improvement, the grey patches were areas of permanent damage.

In an appointment 16 months after my original diagnosis, the neurologist said he would not expect any significant improvement.

It was a sombre chat. The neurologist was immensely pleased at how incredibly well I had done. But there was a finality about the meeting. I was being told what I had known or suspected – that this was me from now on, and I wouldn’t get better. It was very tense and sobering to see it there, literally, in black and white on the scan pictures. One phrase I found hard to hear was that I would have to start to “lower my expectations” of myself and what I could do. That sounded quite final, like the start of a decline.

Pulling things together

Although sobering, the conversation was on a different level from previous appointments, and in some ways the realism was welcome. Little bits started to come together that hadn’t tallied for me before. After my first scan the jury had been sort of out on whether I had multiple sclerosis or ADEM because the radiologist saw that I had previous lesions and thought that it might be MS, but the consultant thought it was ADEM.

I began to understand, from the conversation with my consultant, his gut instinct that the way that I had responded to treatment made it less likely that my condition is MS, because my recovery would have been slower and less dramatic. But while this is useful to know, I also feel that grey spots on a picture don’t really matter – it’s how I am that’s important.

Living with my condition

My condition affects me in every way, from brain function to swallowing problems, to ulcers on my feet where they have turned in because I can’t balance. On top of that I feel absolutely worn out and exhausted and everything is a huge struggle. I have felt progressively less able and things like getting out of bed and having a shower take me ages.

I don’t look massively unwell and try to take good care of my appearance, so this doesn’t really show. If you look well, people feel that you are well which is easier for them and reduces the tension. I don’t really tell anyone everything about how I am, because I don’t want to upset people unduly. I just tell people stuff I think they can cope with hearing.

Having a neurological illness, I have noticed that some medics are terrified and often don’t want to treat me. Also because my illness is rare, many have not heard of it and confess that they need to look it up on Google. I don’t mind that because I don’t expect doctors to know everything, and I don’t blame my doctors for not picking up on my illness sooner. The doctors who have treated me throughout my illness have been fantastic.

On the plus side, there is masses of help out there for people with disabilities. For example, I am a diehard football fan and I can now get a disabled parking space, a reduced price season ticket, and my son, who accompanies me to matches, gets in free as my carer.

I have been touched by the amazing kindness from people, not just friends and family but neighbours, people I see out walking the dogs and strangers who go out of their way to help me in day to day situations. It's a positive thing and at least for me, wholly unexpected. There is good in this world, it’s just not often reported.

Looking to the future

Doctors like to make people better and give people answers and send them on their way, but they can’t do that with this type of illness. I don’t know what the future will hold, but my meeting with the neurologist marked the close of one chapter and the start of the next. The next steps are to keep in touch with the rehabilitation team and discuss things that will help me cope, like pain management. I’ll take all the help that’s available and I’m delighted to help any medical students along the way!


Janice's follow up story

A few months ago, I wrote an article for the Brain & Spine Foundation's website (above) about being diagnosed with ADEM. The article described how the condition affects me physically and how my consultant's words had made me feel, facing up to the fact that I wouldn't get better.

Black and white

Having the article published was like 'coming out'. Not many people would have known everything that I wrote there; although I did allude to my condition on Facebook, I didn’t talk explicitly about it. When the article was mentioned on Twitter, I did have a moment where I thought, "Yikes! What have I done?" but that gave way to a feeling of, "Just do it."

It has been a very tangible stage in the process of moving on; it is there, like my brain scan was, in black and white. It has made the illness very real and I have had to think about it a lot more recently – previously I hadn’t been so concentrated on it as I have been.

Making contact and reaching out

Going public about my condition has been very good on a lot of levels. I have had a really positive response, with a lot of touching, kind words.

After the article was published, someone who also has ADEM made contact with me. They are involved with a Transverse Myelitis group on Facebook. There are several groups covering illnesses like ADEM and TM, and I have joined a few of these and made some very good friends.

I also received an email from a lady who said my story reminded her of some stuff in her own life, and gave her a kick start. I think conditions like this can be very isolating so anything that gives someone a kick start, or helps by reaching out, is worth doing.
Improving health services

‘Neurological Voices’ is a short course, delivered by the Neurological Alliance of Scotland, which prepares people like me with neurological conditions, and their carers, to get involved in planning and improving their local health services.

I went along to the training, and although I was shattered after a morning meeting, it was interesting to meet more people and get a flavour of a professional environment again. The setup is still embryonic at the moment and developing as we speak. There’s another meeting planned for August, so let’s see what we can do.

Practical advice

I also called the Brain & Spine Foundation Helpline for the first time and got some helpful information from one of the nurses. From that, after the first conversation, other questions started to develop in my mind. I now had an idea of what was on offer from the helpline, so I tapped into it again with my questions about day to day, practical stuff that my consultant would not be able to help with. Things like, why on earth do I feel tired when I am doing nothing? The nurse was able to explain this to me in a way that made sense, and offered practical suggestions like: when you feel tired, have a glass of water.

Acceptance

When you start to do stuff like that, it is positive. You could look at it as a stage in your recovery – you must probably be physically better than when you were first diagnosed to be able to be doing it, and mentally it is a sign of acceptance.

Looking back at the past few months, the list above is evidence of how much I have achieved and how much on the go I have been. I feel that's really positive as I'm not just unwell, I have been moving forward and progressing. This time, I haven't written so much about my personal feelings as I did in my first article, but that's because I'm now at the beginning of something else. The next stage is just beginning so I don't know how I feel about it yet.

My tips for learning to live with your condition

  • Take all the help and advice you can get.
  • Then, think about how it works for you - what you do has to be personal to you. Take the bits that are most relevant, as if you are dipping into a pot of information.
  • Allow friends and family to help - it makes them feel better.
  • Most of these conditions are too big to conquer all at once, so don't expect too much, too soon. Chip away at it - there will often be setbacks but you will have small victories too. You won't be able to take skills and abilities for granted the way you did before your illness, so focus your expectations on smaller, more practical goals.