ajay
Forum Replies Created
-
I don’t have many friends either. Everybody I know I have met through work, school or university. It’s very difficult to make friends. If I go to a bar, unless I make an effort to go and speak to someone, most of the time I will be ignored. There are some people that stare but not many.
I sometimes wonder how I am perceived in their eyes? Do they see a disabled person with severe scoliosis and no movement or do they see me as a person, an individual no different to them?
The fact is, I will always be different but at the same time, I find a lot of people cannot embrace the similarities.
-
I had to temporarily stop taking Risdiplam because of my stomach issues. I still have residing side effects from it and after 2 weeks my stomach is still not right. I also tried taking Imodium but that didn’t help. What I would be interested to know is if so many people are having stomach problems with this medication then why is that? Is it something that they have put in it that’s causing the issue?
-
I also dislike certain parts of my body. I tend to not look in the mirror so often below my neck but one day I had someone take a picture of my naked body and I was shocked to see what I saw. I had never seen myself completely naked and I didn’t like what I saw but at the same time it was something new to me and I knew I can’t change it so there was some acceptance there. What I saw was a severe scoliosis and a body that was all twisted. I did think to myself at some stage how can someone ever love that?
Personality-wise I’m pretty happy with who I am and I know that when I’m happy people generally would like to be around me but what gets me down is when I think, “would I ever find a woman that could ever accept my personality and body fully and perhaps even find it attractive?” My mind says “no” but my heart says “maybe”.
-
Thank you for all of the replies. I hope the symptoms improve as well and I think I will need to change my diet slightly. I eat a lot of fibre normally to help with going to the toilet but I will need to reduce that considerably whilst taking this medication.
I started taking some protein shakes recently a few months back but only a little bit of protein so I guess I could try increasing that to see if it helps to stop the food digesting so quickly. Because at the moment I have to keep eating every two hours because I feel like I’m going to faint.
Also, it says that you have to take Evrysdi at the same time every day but does it make a difference if you take it a couple of hours later than the usual time? It’s just that sometimes I wake up late on the weekend and therefore that would mean that I would be taking it slightly later.
I have tried contacting my doctor but I haven’t heard anything back as yet and I don’t know when she will contact me as I left numerous messages. In the meantime, I really appreciate everyone’s help and advice.
Thank you
-
Yes please do because my brace is over 15 years old and starting to get weaker and not as supportive. It’s starting to make me depressed as I feel like there’s little hope.
-
Thank you for the reply. My humidifier only has 3 settings and I have set it to the lowest. When you say that the mist goes up your nose if the humidifier is set to high, what happens? Lately, I’ve been finding that I keep having moisture in my nose and it feels like I have a cold but I don’t. Could the humidifier be causing that?
-
One of the biggest problems I have using a BiPAP is finding a comfortable mask. I have tried so many masks such as nasal masks but they hurt the bridge of my nose and other masks seem to leak during the night. At the moment I have been using a P10 mask but that as started to cause some soreness around my septum on my nose.
The other issue I have is not knowing whether I should use a humidifier in the summer or not? I tend to use it during the winter because if I don’t use it then I seem to catch a cold or cold like symptoms.
Would you have any recommendations of any masks or how to deal with issues with using a humidifier?
Thanks