Update for January 2017It has been a couple of years since I have added anything serious to this web-site. Apologies, but I have been finding out what normal is now!
All I can say is "It has been a fun 6 years of my life". I know all too well what my limitations are and if I overstep the limit, then boy do I suffer. The best analogy I can draw is to a battery, I have so much energy to use and once it has gone; I am totally drained and need time to recharge. So life is reasonably steady/stable and this is how far I have come: General Health - I still can't really feel the bottom of my feet, but it improves the further up my legs you get. Above the shins is pretty good, above the knees is fine. The other area it impacts is my abdomen (but I still don't know why - where this is numb than around it, but OK) I struggle with balance and can be very unsteady. I have sharp pains in my feet/toes most nights, which can get very severe and does affect my sleeping. These also happen at random times during the day, but tend to be of less duration. Sleeping - I go to bed around 21:00 to 21:30 and go off to sleep really quickly, but I will wake up between 02:00 and 03:00 just about every night and never make it through to morning in one go. Sometimes I lie there and try and manage, sometimes I get up and get pills, or just get up and do some work. There seems to be no pattern and it doesn't matter if I stay up later as I will still wake up around the same time. Mind you it is worse in the winter than summer. Pain Killers - Pills are still required, max strength Cocodamol, I try and avoid the Tramadol as it really knocks me out and makes me feel groggy. I can't do anything afterwards including working or driving. Variety - I have OK days where I am limited to what I can do and get tired easily and I have bad days where everything is a struggle. I still manage to do things like get to work, but I really do suffer and just try not to show it. Luckily I have a desk upstairs to work from so I can work most days. Movement Indoors - I can walk around indoors not too bad (on good days), but stairs are difficult. Need to be very careful especially going down and use handrails ideally. At home I don't use my stick, but everywhere else I do (as they may not have handrails both sides of a stair) and I do struggle otherwise. For the house we have other rails/assistance measures (e.g. seat for bath, handrails for shower and toilets) which makes things easier, plus I know where things are. I can shower, but can't lift my feet too far,even when holding on, thus they don't get done. Movement Outdoors - This is much more varied as it depends on surface conditions and lighting etc. If I can see it (which means I spend a lot of time looking down) and it is stable then I'm OK. If either of these two are not aligned then I have trouble and can/will fall over (again this is on good days). An example is a couple of days ago at a train station early in the morning, part of the platform was slippy, I didn't notice and can't see this so I fell over quite heavily. People were really great but all I do is skin knuckles or bruise myself (it is good I wear a thick coat!). It is a regular occurrence that I slip/loose by balance, most times there is a wall or something and my stick helps, but every so often I do fall. Movement Speed - I am much slower and more cautious than before CIDP and spend an awful amount of time looking down. I probably move at the very best at half the speed I used to, normally about one third and on bad days, just can't/don't at all! How far can I get Outdoors? - On a good day, with no wind/rain on smooth surfaces; probably about quarter of a mile without having to sit down and rest. On a bad day with bad weather and nasty terrain; I will not go out at all. Good day with bad conditions I will go out, as I have to for work, but really struggle and crowds are to be avoided as I have been knocked down on a number of occasions and buffeted on so many I could never count - especially in London. An example is in Leeds there is a long straight street in the centre (Wellington Street) It was a autumn day and I had well over 1 hour to get from one end to the other (about 1 mile from the hotel to the station). I know the location and I know there is seating available in a few places on the way. I felt good, so I decided to walk. In 15 mins I was doing OK, with a few stops, but the wind was blowing and there are high buildings either side. This meant I couldn't walk into the wind and go anywhere, so I had to give up and call a cab! Cooking - I can't really lift heavy pans, well I can if I am stable and then don't move them far! Thus, when I do cook, I plate up right next to the cooker, so the farthest the pan travels is about 1 foot and I do not have to move my feet! Work - I have been really fortunate with work and they have allowed me to adjust my work practices to suit/cope. I work from home a lot more and though my job involves meeting customers and travelling, everything is done at a slower pace to allow me to manage and done in my own way (so I decide what I can/can't do). They also don't mind the curious hours I keep and the fact I am very regimented about how long I work for. They even put up with my days off sick (but again they know I don't have any choice). Play - I don't do anything active! I would love too, but seem so tired from the daily "have to's" of work that any other time is spent recovering or getting ready for the next day. |
In Conculsion
I am not bitter, depressed or upset about what has happened to me. It was not "The hand of God!". I won the lottery, just the wrong one.
It has changed me in so many ways and quite a few for the better. I do not need pills (apart from for the pain!), I do not want sympathy, just understanding that what others take for granted is a bit more difficult for me.
I have had to adjust to a "life changing event" so I have adjusted and am getting on with life, with a few more limitations:
In Life You Play The Cards You Have Been Dealt
You can't change them, so quit worrying and get on with it....!
It has changed me in so many ways and quite a few for the better. I do not need pills (apart from for the pain!), I do not want sympathy, just understanding that what others take for granted is a bit more difficult for me.
I have had to adjust to a "life changing event" so I have adjusted and am getting on with life, with a few more limitations:
In Life You Play The Cards You Have Been Dealt
You can't change them, so quit worrying and get on with it....!