I am Humair Arshad, a 26 year old from Northolt, Middlesex. I have Duchenne Muscular Dystrophy, a muscle wasting condition that weakens all muscles in the body, which has no cure at the moment. I am a full-time user of a wheelchair and I also have a scoliosis of the back and a slight impairment in my heart. I have decided to write this blog to tell my story and to give people help in coping with this condition and how to deal with a disability. My passion is sports, especially cricket, I love watching Cricket, Football, Tennis, Snooker and the Olympics. I also enjoy reading magazines, articles and books about sports and playing PC games.
December has been an extremely difficult month for me with my toileting/digestion issues cropping up again and me struggling with my mental state. I have been struggling again with toileting issues, gas problems and digesting my food, even though I have been drinking Gaviscon twice a day and taking gasto capsules daily there has been no improvement. Due to these and other general health problems I have really been struggling with my mood and mental state. I have really been feeling frustrated and angry for the last couple of weeks and feeling slightly sorry for myself, hopefully my health can stabilize and my mood can get better over the next few weeks. We have managed the sore spot issue pretty well, not had any other major problems although I have had slight problems with my breathing and general tiredness.
When I have had respite from these problems, I have been watching lots of Football and Cricket, reading magazines and reading a couple of cricket related books. I have also been spending lots of time with my family over the festive period and watching lots of movies with them.
2018 has been a challenging year for me as due to a deterioration in my condition I have lost the ability to do some things that I could do before and have also had to face new challenges to do with my health. My grandfather also passed away which was very hard on the whole family, we all struggled with coping with his loss and dealing with everything that went with it. Although I have had an up and down year, I am proud of myself that I have kept battling on and not given up no matter how hard its got.
My advice to everyone is to keep fighting, don’t give up and always look at the positive in everything.
Happy new year to everyone!
The last two weeks have been a huge challenge for me as my mother had to go abroad and I had to be without her for the first in my life. My mother is my main carer, takes care of me and is the rock in my life, so to spend so long without her has been extremely hard. Although I had my father and grandmother helping me over the last few weeks it has been extremely hard for me having to adjust to someone new after so long. My mother is an incredible woman and has done so much for me in my life, here I list some of the things she has had to cope with and things she has done for me:
- She had to face being called crazy and over-protective by health professionals before I was diagnosed.
- She had to cope with being told her son had a condition that had no cure.
- Having to care for me while raising three other children and maintaining the house.
- She is the main person that takes care of me, and has been doing so since I was diagnosed.
- Got me through Junior school, High school and Sixth-form.
- Helped me transition from Child Care to Adult Care.
- She helped me get to University.
- She has tried to help me achieve everything I have wanted and made sure I received all the opportunities any normal child would get.
Although I already knew how important my mother is to me, the last two weeks have shown me just how much she means to me and how much she helps me. Hopefully she stays well and can help me for many years to come.
I hope she knows how dear she is to me!
October was a fairly good month for me as I did not have too many problems with my health and my mood was pretty good throughout the month. Although I had a good month I did notice a slight deterioration in my wrist and therefore with my ability to use the mouse for my laptop. My toileting and digestion issues have been much more under control, I would put this down to extensive use of a medicine called Laxido and having a spoonful of Gaviscon after every meal. The swallowing issues are pretty much the same as before and my diet is just about acceptable. My general health has been pretty good, aside for some aches and pains and I am in a good place mentally.
I had a appointment with the respiratory team, they said that everything was pretty good, told me to carry on using my ventilator and just did a general check-up. We did discuss about having a feeding tube put into my stomach in the future and although it sounded a bit scary it is something that I might have to look into.
I have again been watching Cricket, Football, Tennis and Snooker on the television and being on the laptop all the time. Reading articles, magazines and books have been passing my time as well as spending lots of time with my family.
I was following the Muscular Dystrophy UK conference that took place last month and was extremely encouraged to hear the positive information coming out about drug testing. The early positive signs show the hard work being done and points to hopefully a cure being found for all forms of Muscular Dystrophy in the future, if not for us than for future generations to come.
We live in hope.
This past month has gone like most months in the last year or so have with me dealing with issues relating to Duchenne Muscular Dystrophy, coping on a daily basis with the many problems I have and doing the same boring things over and over. Lately, I have been feeling extremely trapped in my life, being stuck in the same routine everyday and not being able to do the things that I used to enjoy doing when I was younger. Stuff like playing videogames, being independent, going outdoors and not being able to eat what I want are things that I have lost the ability to do and have led me to have a boring and controlled life. Over the last month, my swallowing and Toileting/Digestion problems have been fairly manageable and my mood and general health have been as good as they can be.
As far as what I have been doing this month, it has been similar to what I do every month. I have been watching a variety of sports, surfing the Internet, reading books and magazines and spending time with my family. Although it does get boring and slightly depressing doing the same things all the time I do feel blessed that I am healthy enough to enjoy my life and have things that I can do.
Stay strong and don’t give up.
Fortunately for me, August was much better than the previous month as I had less physical problems and therefore was in considerably less pain and distress. My sore spot problems have thankfully become manageable through continuous care and action which have reduced the pain. However, the toileting and upset stomach issues are persisting, which is causing me distress. My general health is pretty stable and the muscles and bones in my body are in good condition. Due to my general health being good and the sore spots causing me less problems my mood has improved considerably from the previous month and I am much more upbeat.
I have been enjoying the start of the Premier League Football season (although, my team, Manchester United have not started that well) and watching the England vs India test cricket series. I have also been doing all my usual things that I talk about every month like reading books/magazines and surfing the web. I also enjoyed the last few weeks of the heat wave, although in the last week or so the temperature has dropped which has caused me to feel extremely cold.
Although I have to deal with problems all the time I try to live in the present and just enjoy each day that I have and not worry to much about the future.
I have been having a really hard time this last month as I have been extremely down and feeling slightly sorry for myself. Unfortunately, my struggles with toileting and bowel problems have continued which is causing me major distress and making it extremely hard for me to lead a normal life. These problems coupled with me not feeling that well recently has made me feel down and has slightly drained my will to carry on, but I am not giving up and will continue to fight on. On a brighter note, we have improved the management of my sore spot issue. By using a cream to soothe the pain, a plaster for support and the gel pack to relieve pressure we have managed to reduce pain and make it much more bearable. I have continued to manage my swallowing issue and monitor and analyze my overall health.
As for what I have been doing this past month, I enjoyed watching the end of the Football World Cup and also watched some Cricket and Snooker. I also enjoy quiz shows and watching cooking shows on Food Network. I have been using the laptop and reading my books and magazines. I have also been spending lots of time with my family especially since my younger sister is off from school and my younger brother is on University break.