Who am I?

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.

June/July 2019

The last two months have on the whole been pretty good. Although I have been suffering with tightness in my arms, legs and ankles; my general health has been good and have not had any new medical problems. Something that is causing me distress though is my stomach which continues to give me problems on a daily basis. The stomach issues are extremely hard to contend with and really cause me to feel down all the time. My swallowing is the same as before with constant monitoring and experimenting to see what works well and what does not. A meeting is also being organized with the doctors who carry out the food pipe operation so that they can tell me all about it, the procedure and the pros and cons so I can make an informed decision when the time is right. I also suffered a cold which lasted a week or so and made me slightly weak and tired.

‘Getting the flu is extremely frustrating and can be dangerous for me as it can lead me to get chest infections and even Pneumonia. When I get I normally have a fever for a couple of nights together with a sore throat, runny nose and coughing. A lot of mucus gets into my chest and I have to use a cough assist on a daily basis to clear the chest and relieve me of a feeling of tightness. Whenever I get ill I always tend to stay in bed for a couple of days as I get extremely weak and tired. I also lose my appetite and also suffer from major gas in my stomach which causes lots of distress. Another issue when I get ill is that my local GP doctor prescribes me a course of antibiotics 3/4 times a day every time I get the flu to stop me from getting a chest infection, but due to how strong the medicine is I can only have the antibiotics once a day which means it takes longer for me to get better’

Although I had recovered from the flu within a week I am still suffering with mucus in my chest even now. Fortunately for me, I did not get very ill or get a chest infection which made it easier for me recover and get better within a week.

When I have not been struggling with illness I have been watching and enjoying the Men’s Cricket World Cup and the Women’s Football World Cup. As well as watching other sports and TV shows I have been reading magazines online and surfing the internet. I have also been spending lots of time with my family and just generally relaxing.

Humair

April 2019

Another month of the usual struggles and problems has been survived, but there has been no major deterioration in my condition. My general health has like most months been pretty stable, although I have been slightly down a couple times in the month everything has been going as well as is possible. My toileting and Digestion problems continue as normal and I am still managing my stomach issues with Gaviscon and careful monitoring. I have found it slightly easier to manage my swallowing issues over the last few months as I have found out what I can eat and how to sort problems out. I am still having problems with my sleeping and continue to feel tired throughout the day. I have also been feeling pain in my trunk and legs over the last few weeks due to the pressure on my body that sitting in my wheelchair for to long each day causes. Happily, I am still battling and facing my problems head on and still enjoying my life as much as I can.

Unfortunately I have not done anything too exciting over the last month, just the usual things I normally do. I have been watching lots of Football and also the World Championship Snooker that is currently taking place. I have been reading my magazines, surfing the internet and watching some shows on television. I also spent time with my little sister over the Easter holidays, just watching movies and playing games together.

Keep fighting,

Humair

March 2019

The whole of March has been an extremely busy and stressful month for everyone due to my sisters wedding, from the preparations to the three events it has been full on. Although it was extremely hard for me throughout the month I still took part fully in the wedding, helping with the planning and attending the events. You will be happy to know that everything went really well, the events were well received and everyone enjoyed themselves.

My general health has been pretty stable in the past month, although it was affected slightly due to the wedding which disrupted my normal routine resulting in some concerns and having to withstand more pain than normal. My whole body is working as well as it possibly can and nothing has deteriorated outside or inside the body. I have been struggling with tiredness slightly over the last few months, feeling tired during the day and not being able to get up early in the morning, I think this is down to my energy being low and being a bit down on vitamins. My stomach problems continue to be a cause of concern for me, although I have found a way to deal with them, some days are worst than others and it causes me a lot of grief. Due to my swallowing issues my food intake has definitely diminished, but we are still just about coping by eating softer foods and finding alternative to things I can’t have. My mood has been really good for the past month and I am happy and content with my life at the moment.

In the time when I have had respite from the wedding business I have just been watching lots of sports on TV and reading my usual magazines. For the past week, since the last event everyone including me has been taking it extremely easy and just recovering from a truly stressful month.

All the best,

Humair

 

 

 

January/February 2019

The last two months have, in general, been pretty good with the usual few difficult moments thrown in. My general health has been good and I do not feel like my strength has gone down or have I become weaker. My toileting/digestion issues have been slightly more manageable these past few months due to strict use of Gaviscon each and every day. Swallowing is still a problem for me although I have found what things I can eat easily and am starting to come to terms with the issue. I have been struggling with my sleep over the last couple of weeks, being restless all through the night and having to ask my parents to turn me way more the normal. My mood has been slightly better recently and I have been coping with my problems well.

We have been preparing for my sisters wedding, so the whole family has been busy helping with that. Aside from helping with preparing for the wedding I have been watching lots of Cricket and Premier League Football. I have also been reading my magazines and surfing the internet. I have been following the local politics and watching shows on the internet.

Until next time,

Humair

Between Then and Now

Sidewalks and Stairwells

It’s been a while since my last book update.

I am happy to say that I am still making progress, albeit slowly. Working full-time only affords me limited energy at the end of the day to type coherent sentences, but it is progress nonetheless. In the beginning, I was keeping track of how many pages I had written. Although by now I’ve lost track, I am well over 300 at this point.

Instead of tracking page count, the way I measure my writing progress is by where I am in my story. Right now, I am in late 2012, right on the cusp of the most emotional two months of my life. January and February 2013 was a defining period that changed the trajectory of my life forever. Even now, it still elicits mixed emotions. The pain of loss. The frustration of dealing with a rapidly-weakening body. The nostalgia of…

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Human Mind

In this post I wanted to talk about how all human beings in the world, no matter how rich or famous they are, all have problems and issues in their lives. I believe that every person in the world faces difficult moments in their lives but that everyone has different ultimate limits of pain they can withstand and therefore a person only faces problems that they can cope with. Although it might seem that someone else’s problems are small and minor compared to yours to them those problems would be massive and extremely hard to solve. It may seem on the outside that someone is happy and has no real problems in their life but you never know what is going through their mind and the turmoil they might be in. I think you should never assume that someone is happy and that they have no problems because you never know how they are feeling, what they have overcome, what they are experiencing and what they might encounter in the future.

Although it can be extremely hard to cope with having physical or mental issues in your life you need to remember that there are lots of people who are struggling and that everyone will have their own issues they are dealing with. If you have these problems in your life it is really important to be strong, have a good support system, ask for assistance when you need it and never give up.

Humair

December 2018

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!

Humair