dream now plan plan and maybe plan some more
Twenty-odd years of travelling'this my Relapsing Remitting ms (RRms) life and I think I have learned a few things, Some the very hard way some, easy is too strong a word but "YOU" get the picture.
I have learned that not everything I want to do, can I do. Difficult at first, as a 28-year-old man I was supposed to do all sorts of things. Lift heavy weights, drive a fast car and even have a job. We shall not talk about the other sex issues, that was history. I got diagnosed (Dx'd} a week later I was divorced, such is life. RRms threw all my plans to the ground and stomped on them. Stomped them into dust then blew them all away. Then it made me face a truly irrational fear. My phobia of needles. To this day I truly dislike them. I have found a gentleman who is my Guru of blood tests so I am a little better. I ask for him and I will wait until he is available, I am that paranoid. Actually, if somebody else has to give me an injection I have learnt his procedure, use a butterfly needle, and I now ask for that.
It is part of my planning, my control. If I have to have a needle, I ask for my guru, If it is somewhere other than my regular blood test facility, I make sure I ask for a butterfly syringe. I very quickly say I am a fainter and point out that they can not pick me up off the floor.
I plan. I know what is going to happen, or what could happen and I plan. I am not a big fan of surprises RRms was a big enough surprise for one lifetime. I seel quite happy to limit any more surprises.
Alas, we all have RRms so of course, that means many more surprises, but it does not have to be that way.
I like "YOU" have studied and learnt about my RRms. I know that it will never be cured, but I do know that Disease Modifying Therapy (DMI) will slow its progression down some. The longer the better. If I can keep on my feet, I like that. If I have to use a cane or a mobility aid I "CAN and "WILL" cope with that. Just because I am categorised as chronically disabled does not mean that I can not be bloody-minded and determined.
I will plan for what eventualities that I can. I "WILL" dream of great things and if need be I "WILL ADAPT and CHANGE" We have taken a sharp turn on our imagined life path. None of us asked for this, that we can remember. It is ours now and we must live it to the fullest. RRms is part of our very long lives, it does not have o be an intolerable burden that breaks us. Make your RRms life, good if not great. Do your best, forgive yourself when "YOU" can not do something and think of another way that possibly will allow "YOU" to reach your ultimate goal. Never just give up and think that "YOU" can never do something.. Twenty years ago she who must be obeyed never left her house and could not drive. Now I have to figure out where the money is coming from to buy a new car. Something I had not planned for, ever, but plan I now must.
Always plan but expect that your plans will not come to fruition exactly as "YOU" had planned. This is life with RRms, topsy-turvey all squiggly and not in the least how "YOU" or I had ever hoped it to be.
Royce
It is an amusing journey, keep your sense of humour, in the end we are all in the same place.
