Stop is a universal language when it comes to signs - you may not be able to pronounce written words, but the shape of the sign speaks it's own language. Wish that chronic illness like MS were like this - you noticed a sign, and you understood the general meaning.
Before my sailing trip this summer I experienced a nervous stomach - like my mind all excited abot the upcoming trip, worries - can I really make it? Will it be the adventure/experience that I hoped for? Etc. - Normal right?
When I got home I realized that the stomach problems continued so I addressed it to the local MS clinic who did not see it as a link to the MS and therefore sent me to some other doctors for evaluation as they could see, that something was not right. Imagine my surprise when a doctor after 3 months of doctor visits, examinations, scans etc. told me, that my bowel problems is cause by my bladder?? HUH??!!! It turned out that I have a "party bladder", but unable to empty it fully without help - hence pressure on the bowel and other parts.
That really hit me, as I now have permanent symptoms of my MS that for the rest of my life need to be medicated and need full things - again one can not see it, but it is inside me. Until new medication works I am worried about my stomach, forcing me to say no to a lot of activities and even part time at my work (They are really supportive at the moment) - When will it be at a level, where I am not worried any more but can rely on the medication to work?
It drains me from energy to know, that if I had just had similar symptoms to others with MS, I might have caught it months ago and been able to have the medication work by now - the "party bladder" is very unusual compared to a leaking bladder .. and the attack I had a few months ago was not solely cause by the hard sailing trip this summer but also due to the bladder/bowel problems. I accept that I now have new permanent conditions - but is totally frustrated about the time it takes for the body to adjust to the medicine and then allow me to do some of the normal activities again because now I just want to be very close to a toilet at all time.
When I talked to a professional yesterday about my worries, she said that my thoughts were healthy for me - and that the sailing trip this summer have actually thought me a lot about MS in general - It also makes me accept that things will follow in the wake of an MS diagnosis - I am just SOO impatient when it comes to the body adjusting to medication, which actually makes me smile a little.
Everything is postponed or delayed - in the past few days I went from having no clue about this year's Christmas cards to have 3 ideas, and I can not decide which one to pick. Next obstacle will be getting the supplies needed and muster up time to do it without getting to tired.