As this year comes to a close, I would like to reflect on this past years events, feelings and New Years resolutions. To begin with the starting of the support group I hope has been such a gift to the members as much as to myself. The support group some days larger some days smaller groups but it seems even if it’s just a few, it was meant to be just the few of us. The biggest gift is the understanding that we all are experiencing different and some of the same symptoms, and we are all feeling alone in this disease. I have also had the gift of getting to know the other side from the spouses on what they go through, which has helped me in my own life. I have also learned the lack of communication between Doctors is our biggest hurdle and lack of public recognition of this disease with family, friends, co workers and the general public. Example: If I share I have a Vestibular dysfunction autoimmune disease, people will say “oh” and continue there own conversation, If I said I had a broken leg, MS or cancer, the response would be completely different. Not because people are rude but because people don’t understand or have never heard of this disease.
This year has been has been extremely difficult for me, My symptoms worsened, I am disabled and yet I am so grateful that I am still mobile and have my family to help me when needed. The biggest change in my health has been the visual changes on a regular basis and my drop attacks ( I fall with out any notification) There is no bracing yourself, or putting your arm up for protection, I just do it, end up where ever I fall, then instantly want to throw up. Then I feel so tired, like I can’t get up, function, takes me a day or so to recover, forget the bruising, knots on the head or sore body, it’s the cognitive and fatigue that is the hardest to recover from, almost feels like getting run over by a truck. But I feel I am still trying to learn my limits and if I push them I pay. But for me, the support group has become my safe place, my place I can be my self, say how I really feel and cry if I need to with out any judgement.
This next year my goal is to increase the group size even just a little, write letters to all the Doctors involved in our care explaining what patients with our illness go through and need from them. I would like to establish a newsletter to send to them on a regular basis, I would like to raise awareness about Vestibular dysfunction as much as a I can. I would also like to continue having some speakers for different aspects of our disease, we know there is no cure, but just to help us understand what’s happening to us. To provide support and education for us. I also want so desperately to make Doctors to understand the depression aspect of our disease.
On a personal level, I have to still adjust to the new me and hope I can accept this person and learn to love this person with out guilt of who I use to be, the guilt of not being able to participate in every function, or do more than I can or even contribute as much as I use to. This is the hardest hurdle for me. So I am looking forward to 2016. I am hoping trying so hard to be happy with me.