I guess a little about me would be in order before I start complaining. I was dx’ed almost 20 years ago, and yeah went through a couple of years ruling out everything else before being given the sentence of MS. A few years before that of denying that anything was wrong so living with MS for what 25 or so years? I am very fortunate in that I am still mobile (just recently starting using a cane on bad days) and to look at me you would not see that I have MS. Fatigue and cog fog in addition to a limp are my most noticeable symptoms - the pain you don’t see of course.
Went to neuro yesterday - first time in almost a year. He has had some type of medical problems and has fallen behind somewhat in his practice. I really did not want to start with a new doctor, so even though I have been experiencing new and/or worsening of symptoms this past year I waited until I could see him. I felt that there wasn’t really anything he could do anyways ..
Well when I left his office he had a game plan, but I certainly didn’t expect all the testing required to put anything into motion. Blood work yesterday, EEG Friday, MRI and Sleep Study next week and waiting on call from urologist to see what testing he has for me. I am suppose to make apt with my PCP for assorted testing and also with my Ophthalmologist. Luckily they DO talk to one another so when I go back to neuro in three months he will have all data in hand. He and my DH both made the same comment about how good I am doing after 20 years to be able to do so much, and that so many MSers couldn't say the same.
DH even dared to tell me that I should be grateful. And I am. Really. All I asked GOD for after dx was to be able to raise my 3 kids before I fell apart, and that has happened. Even have 4 wonderful grand-kids now.
Yes I have lost stuff too. I career that I loved and was great at. The ability to work in my yard like I was able to do before (and that really shows!). Even the ability to be as independent as I was before. I mean I can mostly still take of myself, but it is bad enough that my husband checks on my via phone several times a day while he is at work. He has ‘forbidden’ me to work on my goldfish pond when he is not with me. Cooking is something that I have to be VERY mindful of lest I burn not only dinner but the house down also. The cane is a pain because I am usually trying to be efficient and carry things as I go from one place to the next but still not unbearable (maybe because I only use it sometimes?). The adult diapers aren't all that bad - DH is the only one other than me that knows I am wearing them, but have not used them much during summer months ..
Just feeling afraid of what’s next. And guilty too, about husband - he is so very understanding that I sometimes sleep 16 hours out of 24, and the house isn't clean like I had it in past, and he even makes sure I eat when I don’t feel up to cooking.
Proofing this I see a crazy person, but that is how I feel right now. I don’t want to get worse! I don’t want to have to self cath! I don’t want a walker! I don’t want to have to depend on anyone to take care of me! I am sorry for being such a spoiled brat - I know that many people reading this don’t have it as good as I do and have. Just feeling so down and afraid right now.
Thanks for letting me vent.
Went to neuro yesterday - first time in almost a year. He has had some type of medical problems and has fallen behind somewhat in his practice. I really did not want to start with a new doctor, so even though I have been experiencing new and/or worsening of symptoms this past year I waited until I could see him. I felt that there wasn’t really anything he could do anyways ..
Well when I left his office he had a game plan, but I certainly didn’t expect all the testing required to put anything into motion. Blood work yesterday, EEG Friday, MRI and Sleep Study next week and waiting on call from urologist to see what testing he has for me. I am suppose to make apt with my PCP for assorted testing and also with my Ophthalmologist. Luckily they DO talk to one another so when I go back to neuro in three months he will have all data in hand. He and my DH both made the same comment about how good I am doing after 20 years to be able to do so much, and that so many MSers couldn't say the same.
DH even dared to tell me that I should be grateful. And I am. Really. All I asked GOD for after dx was to be able to raise my 3 kids before I fell apart, and that has happened. Even have 4 wonderful grand-kids now.
Yes I have lost stuff too. I career that I loved and was great at. The ability to work in my yard like I was able to do before (and that really shows!). Even the ability to be as independent as I was before. I mean I can mostly still take of myself, but it is bad enough that my husband checks on my via phone several times a day while he is at work. He has ‘forbidden’ me to work on my goldfish pond when he is not with me. Cooking is something that I have to be VERY mindful of lest I burn not only dinner but the house down also. The cane is a pain because I am usually trying to be efficient and carry things as I go from one place to the next but still not unbearable (maybe because I only use it sometimes?). The adult diapers aren't all that bad - DH is the only one other than me that knows I am wearing them, but have not used them much during summer months ..
Just feeling afraid of what’s next. And guilty too, about husband - he is so very understanding that I sometimes sleep 16 hours out of 24, and the house isn't clean like I had it in past, and he even makes sure I eat when I don’t feel up to cooking.
Proofing this I see a crazy person, but that is how I feel right now. I don’t want to get worse! I don’t want to have to self cath! I don’t want a walker! I don’t want to have to depend on anyone to take care of me! I am sorry for being such a spoiled brat - I know that many people reading this don’t have it as good as I do and have. Just feeling so down and afraid right now.
Thanks for letting me vent.
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