Category Archives: Living With MS

X-Mass and Health update

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X-Mass in the UK

X-Mass in the UK
Another time for you
And another time for me
A tumble-down side wheel
Of oblivious cast
This rusting on the bumper
Has been set to last

Another sense of alteration
Freezing inside
The jumbling up of memory
And mixing logic dry
A welcome look above the store
We all ask for the same
But refrain from doing something more…
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X-Mass this year was a curious mix of the old and the new. The feeling that I am in something of a changeable state is not exactly a recent one for me, but nevertheless it was one that spoke loudly to me during this period.
I saw some very good friends and family and returned to Berlin on Boxing the Box day.
Health-wise all is good, and I feel positive about the future and my personal well-being going forward. Bring on 2014!

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Split in Finity

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We three Kings of Orient are
Two in the gutter, one in the bar
Flowing freely, given to drink
Audible from afar

Status Report
Happy to report that no ill effects or signs of relapse have shown up recently. In fact, concentration levels are up. I still feel a bit of fatigue every now and then, but it’s perfectly manageable. This is the 2nd month I’ve been on the Boswellia trial and so far it seems to have had a slight improvement on general health. It is difficult to make specific judgements about these very slight changes, however.

In any case, I feel far more creative than I have done in the recent past so there will be more creative writing and illustration from me in the coming months…

Week 2 of Trial

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An internal conflict that suffered a loss
An external balance that’s counting the cost
A tidal wav form of gratitude
And a rolling stumbling semblance of mood…

Week two of the Boswellia trial. I have had no obvious changes or setbacks in health. Concentration wise I am able work for slightly longer than I was. Feel pretty strong most of the time and sleeping patterns are becoming more relaxed. This may be an effect of the Boswellia or, as I suspect, the easing effect of knowing that I am on a course of treatment.  I still get tired in the afternoon for a bit but I have been avoiding napping. Too much to do. It’s a time for reflection… and activity!

(The above drawing was done in the grounds of the London Imperial War Museum in the distant summertime…)

SABA and Boswellia first week…

ImageSo, I started my clinical trial of Boswellia Serrata (frankincence) last week. It was an extra long day at the Charité , which left me feeling exhausted but confident in the ongoing handling of my condition. After 2 (count em! Er, 1, 2…) MRI scans, a motion capture research scheme and the usual tonnage of questionnaire forms and tests, I was off, big box of Boswellia capsules in hand.

After a week on the gradually increasing dosage of the treatment I feel fine. No major ups or downs. My sleeping patterns are still a bit disturbed and I still have some pretty bad stress related acne, but apart from that I have no real symptoms of anything too much. A week is probably too early to say in terms of memory/mental effects, but I certainly feel quite positive.

I’ll continue to write weekly updates throughout this trial.

Self-management of fatigue

Self-management of fatigue

Interesting post from an MS specialist on coping with daily fatigue.

Impact of Boswellia on Inflammation

Impact of Boswellia on Inflammation

I start a clinical trial of Boswellia next week. It all sounds very promising!

Monday Mix

ImageJust a quick update on the old health situation…

I’m feeling very tired and somewhat frail today. Part of that is probably the old psychological effects of ‘Monday Sickness’, a day of the week which I still have an inbuilt nervousness of, despite the fact I work from home and more or less work when I want deadlines permitting that is…
Cheering me from my dazed-slumber was the news I received from the Charité this morning. Next week after my last pre-trial MRI scan I can begin the course of trial-treatment. All going well this should lesson any undue worries I might have about the condition and how likely any relapses may be.

In general though, I am feeling extremely healthy and positive. Just a case of the Monday aversion today. In one sense, it is all very interesting, both psychologically and philosophically. When our mood goes so far in effecting how we see the world – how much is objective (hint – not a lot) and how much is subjective (hint – most of it)?

MS Update – Early Morning Scan Business

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The ongoing investigation into discovering just what makes my personal MS thing tick took another step forward this morning.

At the (not so) bright and early time of 7.00 I had another MRI scan in the austere quarters of the Kaiserin-Friedrich Haus, just next to the Charité . Rather like getting a brain scan done in a museum or an art gallery (apparently there is a casino in there too!), it had a vaguely relaxing affect on me – or perhaps that was just the lack of sleep…

Anyway as ever, the MRI itself was the usual industrial/ambient crossover; a buzz of beeps, whirs and machine-made glottal stops, strangely inspiring. Obviously, some artists agree, including this group who created this piece back in 2010.

After the show was over, the NeuroCure assistant showed me the picture of my dear old brain. She pointed out two new active lesions, which qualify me for the Boswellia  trial/treatment.

Obviously this is something of a mixed bag – but it is the nature of relapsing/remitting MS that the myelin lesions clear and then are not active, and then new ones form. Anyway, the main thing is that the immediate future of my personal treatment is clear and is in the best possible hands. Staying positive/learning more!

BBC News – MS damage repair treatment looked at by Edinburgh researchers

Interesting report on a possible treatment to promote regeneration of myelin.

BBC News – MS damage repair treatment looked at by Edinburgh researchers.

Health Update

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Just a quick update on my health and MS diagnosis…

Last Wednesday I spent the morning back at the Charité, being administered to further tests and another MRI scan on my brain in order to help further research into the condition. Along with the scan, I was assigned various mental and physical check ups – including a memory test (in German) – to assess my condition.

The results of the scan showed one (small) active lesion so it appears one or more have healed or cleared up. Perhaps, the summer and the sunshine has helped me out more that I realised! In any case, in order to be eligible for the Boswellia clinical trial I would need to exhibit two active lesions. I have agreed to undertake more MRI observation over the next few weeks.

It could well be that the outcome in my particular case will be to keep a monitor without any specific or active treatment, and to stay fit, healthy and positive, all of which I am happy to say I am!