Where do I go from here?

One of the worst things to lose with the diminished cognition of my messy scrambled eggs is my sense of direction. I have toured in the UK for years, decades and was always good at navigation. My parents or more likely my dad taught me and my siblings how to map read. When on holiday, we would sometimes be entrusted with choosing the route to go – straightforward or picture-skew (picturesque is not a particularly English sounding word and skew is sometimes how our routes took us).

Now I know my thalamus may be shrinking - http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1264 but it seems harsh that I cannot remember the simplest of what-should-be-familiar routes. Driving back from our friends’ house on Christmas Day I had to ask MyMan which way to go, repeatedly. I use my satnav more than anyone should. Or is this a case of me just being more normal now? When I bemoan my faulty memory, a friend tells me that before I was exceptional – knew too much, remembered everything (not true) – and now I am just like a normal person. If only. Or rather, I am glad ‘normal’ people do not have to endure what I go through.

Today I saw my GP. She is excellent. Great communication skills. Thorough and dependable, except she works part-time so it can be tricky getting an appointment. Today we went through my 3 point list – moving from Oxybutynin patches to pills, looking at dosage of anti-depressants, and reviewing my Gapapentin in light of a new annoying symptom (stinging soles of the feet).

She knows I have to write things down. Without making me feel awkward or stupid, she jotted down our plan of action – it was ‘ours’ not ‘hers’. The progression steps for each drug. The way forward. Except… I look at the list now and cannot see what I am supposed to be doing with my anti-depressants. I made the next appointment (three weeks’ time) whilst at the surgery as my GP suggested so I wouldn’t forget. I know we are going to review how things are going with the changes. I went to the pharmacy with the prescription and have new Oxybutynin tablets and new dosage Citalopram meds. I have the plan for the Oxybutynin. I have the suggestion for changing Gabapentin. But where are the instructions for the anti-depressants? I hope I am right in thinking I just jump from 20mg to 30mg daily.

Sometimes going on a new journey can be exciting. I quite like driving and not deciding in advance which way to turn. Making it up as you go along. At least I always used to know whether I would need to turn right or left to get near to where I wanted to be.

Nowadays, I have no idea. Everything seems to have gone skew-whiff and it's not pretty. Where do I go from here?

That way madness lies

My mother was a psychiatrist. I remember one ward in her hospital where I felt if you weren’t mad before you stayed, you would be by the time you were supposed to leave. There was always someone crying or shouting. The doors were locked (I think), handles turned the wrong way round.

I sometimes worked in Occupational Therapy there. I remember, during a cookery session, asking a patient who was stirring a bowl of yumminess “What are you making?” “Oh, I’m not doing any cooking today.” Her reply was accompanied by an uncertain smile and bewildered eyes. She kept stirring with the wooden spoon and later produced some excellent biscuits.  

Recently, I received a letter from my GP surgery: “Having a long-term health condition or chronic illness, such as diabetes, pain, or a heart or lung condition, to name just a few, can really impact upon your life…” – no kidding! It offered me “a FREE programme, choosing Self Management for Life, that can help you understand how your condition impacts on your life, your job or even your relationships with family, and how managing these effects can help you take more control of your life and your health… excellent opportunity… runs over seven weekly session, with each session lasting three hours…”

I won’t be taking up the offer. I fear that way madness lies and I’m not afraid often.

I went through a stress management Mindfulness Wellbeing course at a time when I felt no stress but was very sad about my DX. And I was probably still grieving for my father who had died the year before. I felt braver doing that course than jumping out of an airplane (which I also did!). Mindfulness practice seemed to lead to me being more distracted than normal. Everything was thrown off kilter by having to attend the sessions when I was still only just adjusting to a regular routine of taking meds.

At the same time I was having counselling. I would be asked if the Mindfulness course helped. I couldn’t be sure one way or another. I found it very hard to be told I was depressed. It was even harder to admit it to myself. Positively depressing in fact. Or should that be negatively depressing.

Not long after DX, a consultant put forward the possibility that I had the capacity for clinical depression. This was totally alien to me and my BFF who was with me at the time. We rejected the potential as I was ‘normally’ such a positive person. Of course, ‘normal’ no longer existed.

Later, when the idea of being depressed was suggested by my MS specialist nurse, I accepted it.

At the time, I hated being dictated to by routine – meds, injections (I was still on Rebif), the stress reduction clinic, counselling sessions – I didn’t recognise the person with a regular pattern to her days/weeks. I am glad I had admitted to my GP that I wasn’t coping. That I needed help. Needed anti-depressants.

The latter work though I do think it’s strange that, with serotonin levels raised by the anti-depressants, it became harder to write. Perhaps some writers are miserable because they write better when depressed. Is writing therapy for or a symptom of depression? Oh, that way madness lies.

P.S. I googled 'That way madness lies' to check the quote source. For some not-entirely-KingLear viewing, you can watch this: Slings and Arrows - Season 3, Episode 3: That Way Madness Lies

Borderline normal

I have sort of become used to blood tests. It seems that whenever I go to the hospital they take blood, and I go often. I sometimes also have to have blood tests at my GP surgery to supplement the ones at the hospital. I dread bumping into one of the MS Specialist Nurses in the supermarket in case they say ‘Oh, by the way, we just need some more blood’ as I head for the check-out.

I recently started taking part in a research study for a new medicine. More blood tests.

Yesterday I was phoned by one of the study doctors to say I needed to come in to the hospital for another blood test. I was only there last week. She had got the blood test results. She said there was nothing for me to worry about. She was the one doing the worrying. She said it was her job to worry and repeated, several times, that I didn’t have to worry. She did. I didn’t – I’m obedient like that.

I dutifully went to the hospital this afternoon for my blood test. I asked the doctor why they needed another blood test, what was wrong with my blood count from last week’s? He explained about my white blood cells. I nearly understood it all.

The MS Trials Nurse told me that I had only been ‘borderline normal’ at the start of the study. Now there has been a drop in one element of my white blood cell count. I need more neutrophils. Put very simply, mainly because that’s how I understand it, neutrophils gobble up infections. I think they are like Pacmans scooting round the maze of the body. I’ve had a virus – flu which turned into a bacterial infection. My little Pacmans have had their work cut out and are depleted in numbers.

I currently aspire to be borderline normal again. Hopefully I’ll exceed that and become normal. I suspect friends may say that’s impossible. We can all dream, can’t we?