Two Years Later ...

Two Years Later...

I post this, as promised to several who had contacted me via this blog, exactly two years away from diagnosis.

How do I feel now? How is my health now?

 

Well, I'm superb! But am I like before two years ago? I am worse in some aspects, better at others.

I still experience the following symptoms and phenomena:

• Calf Cramps! Nasty ones.
• Hand cramps!
• More Leg Cramps!
• Strange electrical pain at certain accurate scheduled times of the day - usually evenings
• Some short term memory loss / occasional concentration issues (caused by pain filtering mechanisms in my brain)
• Arm/Hand/Finger tremors
• The feeling 'hollow legs', as if they are empty inside. Very iffy feeling. This feeling is now more focused towards the calf muscles and feet.

So let me explain, because, let's face it, the above list is confusing for anyone who have not experienced GBS, to comprehend. It also seems contradictory to my statement that 'I feel superb!'.

You see, GBS has changed a lot of stuff in me as you've probably read in my main blog. My progress to better muscle strength is still continuing up to this date. The pattern remained...I get severe pain...then slowly progress to better movement. As time goes by, progress-events become fewer and further apart. But some are barely noticeable until you come to do some fine task, such as, apply solder to an electronic component on an electronic board.

My O.T and Physio sessions also stopped. It's a matter of nature taking its slow course now. The cramps have also decreased in strength and are much more controllable, in the sense that I can halt a cramp mid-way whilst it's happening. Fascinating, although never welcomed.

In short, I have taken my life back. And yes, I can describe myself as 95% healed. My stamina is almost back, my immediate strength is back, but GBS is strange in a way, because my exercise recovery time is not quite back. If before, I used to require 1 day of rest after vigorous exercise, I still need a whole week, even two, now. But looking at it positively (as should everyone look at things no?) one week is great compared to 1 month that I used to require only some few months ago.

It's only very recently that pain in the plantar-area of my foot has drastically reduced too. The pain was CONSTANT for more than 18 months. Yet, now, I walk flawlessly and mostly pain-free. Unless I get tired that is, in which latter case, I start to limp a bit and get pain similar to plantar-fasciitis. I still wear running shoes everywhere I go. Elegant, hard soled shoes tire me 10X as fast as running shoes - probably due to the crappy foot support they give in preference to the more 'elegant style'.

As explained in my main blog about my GBS experience, I refused, even up to now, to take any medicinal drugs to ease any GBS related pain. I am far too scared of the side-effects of amitriptyline or morphine (or the likes) and I trained myself hard to mentally suppress any pain I might have from time to time (especially evenings at very specific accurate times, such as 8:30PM, 9:10PM, 10:25PM). This pain-supression-via-brain thing however, does take it's toll on me at times, with me losing a bit of short-term memory tasks and patience in general. The time-based accuracy of painful events is one mystery I have not solved yet. Why does it happen at so accurate times? As time went by, I could actually tell the time, based on my pain/cramp events and I was always spot-on +/- 5 mins. Amazing!

My hand atrophy? It's still there. But I see a bulge growing very slowly in the atrophied areas - maybe my hand's physical appearance will return to 100% normal? Who knows? We shall see. The important thing is that I use them normally for just about any task.

The hand tremors? Unfortunately yes - they are there and stronger than ever. Sometimes stuff falls out of my hands. This is the only problem that irks me the most. Sometimes I have trouble doing tiny tiny things, such as soldering or handling tiny wires. Ah well.....I haven't seen this improving. Actually, sometimes, my hand/finger tremors are so bad, I have to rest and re-concentrate at the task at hand with two hands rather than the usual normal one hand. Ah well....compensating. This tremor thing does have a serious toll on my patience at times...but wtf...

I also noticed that coffee (especially espresso) makes my hand tremors way worse! The affect is instant and fascinates me, usually lasting around 3-4 hours. Hunger also has the same affect, as has over-use of my finger/hand muscles.

In what ways am I stronger? Well, if you go through something similar and think life through, and don't die in the process, rest assured you'll be stronger in many many ways. Enough said on this one. ;)

But as I said, I'm being a bit (very) picky in this post of mine - all in all, I really am superb. I can easily hide that I have had GBS to most and have resumed my daily work, duties and activities and even increased hobbies now that I've improved my work/life balance which I did not have before GBS. I have met amazing people since my diagnosis, some of whom fared way worse than I am now, with some having had their diagnosis  around 15 years ago! I was lucky enough to receive scientific intervention right on time! Others may have not, or where in a place and/or time where there were not any  iv-immunoglobulins invented or made available.

I also take this opportunity to thank you all, readers of my story, for the fabulous messages and email and comments of support on this blog. I am very happy and surprised to learn that this blog about my GBS experience was actually read by thousands (despite the length!) around the world. I salute you all.

Stay strong, stay positive - GBS, like my main blog, is not a short story, but a life changing one. 

But an end, it does have, and I think, I think..... I think I can really see it now.... two years on....