I am Humair Arshad, a 29 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.
Life can be so hard sometimes. As you can suspect life has been a rollercoaster the last year since my last post, I have continued to become weaker, my parents are finding it harder to take care of me, my grandmother just had another stroke, the price of living has gone up and much more.
After my grandmother (my mums mum) had a stroke last year she had to move into our house for a month which meant my mother had to look after both me and her at the same time which put a strain on her. Thankfully, after a month of physio and rest she was able to walk properly and go back to live on her own and take care of her self. Then, about a month ago my grandmother had another stroke and this time it was a major one. Unfortunately, she had to stay in the hospital for a whole month without anyone being allowed to see her due to Covid protocols and her left side is more or less paralyzed. Last week she was allowed to come home and now my mother and her siblings must look after her 24/7 with some help from carer’s, this has put a lot of pressure on my mother. It is a huge challenge and hopefully everyone can cope with it and handle the burden.
I think I have been holding up pretty good over the last year even though I have gotten weaker. My body has become weaker with my arms and hands getting tighter and my legs getting more cramps. I am getting a bit more problems with my breathing and having to depend on my ventilator slightly more. My eating and swallowing is still causing problems but it is just about under control, everything else is still pretty similar but just weaker. Although, I did have a medical incident last August where my kidneys become extremely dry and that led me to spend a whole week in hospital. They had to slowly inject water drips into my body to bring the dryness down while also doing lots of blood tests. They also gave me a blood transfusion as my red blood cells were low and thankfully it got fixed and I haven’t had a problem since. I have also had two iron transfusions as my iron level was low. A reason why I have not done any posts is because my hands have gotten tighter and so it is harder for me to type. I can only use the mouse a couple hours a day using camera mouse software which uses my head and eye to move the curser, the rest of the day I have to use the Dragon Naturally Speaking software to use the computer. As I have gotten weaker over the year all I do on a normal day is watch sports, watch shows and go on the computer. Even though it can sometimes get repetitive and boring I try to carry on and just enjoy what I can do.
This last year has shown me that life can be extremely hard sometimes and problems can occur at any time and you need to be able to cope with them and move on. As always, how ever tough life can get all you can do is to keep going and appreciate the good moments on your own and with your loved ones.
Stay strong and keep struggling.
On Sunday evening my grandmother had a stroke, suddenly, and without any real warning. She had been over for the weekend and everything was going well, we were having fun, eating and having a good time when suddenly she had the stroke. Thankfully, she is out of immediate danger but the next two weeks are crucial in her recovery. Although I already appreciate the fact, it reaffirms the notion that life can be turned upside down in a matter of moments. I just wanted to write this post to say that appreciate and treasure the people you love because you never know when they will be gone.
As we start already Lockdown, I am really starting to struggle with the continued feeling of being trapped and stuck. Being in this situation for more than eight months now is really putting a strain on my mind and just getting too much. Although, thankfully, I have not had the virus yet or been really ill, it is a huge burden on me to not be able to leave the house for over eight months and to be extremely careful all the time. To try and make sure I have not got the virus I have had to take many precautions, I have not left the house for over eight months, stayed away from family members who have been outside or my sister who has been to school, been extremely careful and also getting a flu jab. All of this combined is extremely hard on me mentally and it can be really difficult to stay positive during this situation. As for me physically I have definitely grown slightly weaker, but my condition is pretty stable. Due to feeling more weaker I am feeling more tired now so I am struggling to get up in the morning which means I normally get up after 10:30. My digestion and toileting is similar to before so I just have to manage them as much as possible and try to cope with any problems that arise. My eating and swallowing problems continue to get worse, but we are still able to just about cope, Although I am struggling with my appetite and choosing what to eat. One new issue though is that I get a lot of mucus in my throat in the morning which must be taken out everyday which is extremely annoying.
During the main global lockdown I was extremely bored as there was no sports on around the whole world, but as some sports started coming back it made it easier to cope. I have been watching Cricket and Football, as well as lots of Tennis and Snooker. When there has not been any sports on, I have been watching shows on Netflix and Disney+ but after a while it can become extremely repetitive and boring. I have carried on reading magazines online and reading E-books and Audio books. Apart from this I have just been going on the Internet and playing Football Manager.
I hope everything to do with the virus can be fixed and we can go back to normal as quickly as possible. I pray for everyone who has been affected by the virus and hope that a cure is found soon.
Life is hard, but don’t give up.
In the nine months since my last post there have been many changes in the world and it has been extremely hard not to get completely depressed with what is going on. The awful pandemic and the subsequent lockdown have been very hard to cope with and have affected me greatly both physically and mentally. I have been trapped in my house for over four months as I am in the most vulnerable category and it would be extremely dangerous if I was to get the virus. My family has also not left the house for three months to make sure I don’t catch the virus from them and only my father has left the house for essential activities. I have not seen anyone from another household for three months and that makes it extremely boring and makes me feel sad. Being stuck at home for so long and being constantly worried about catching the virus has caused a lot of anxiety and makes me on edge all the time. In the lockdown I have been extremely bored as there has been very little for me to do with no live sports to watch and nothing much to do which has caused me to get down extremely often. The only things that I have been really doing over the last four months are going on the internet, using Disney Plus and watching shows on streaming services.
It has been very hard the past nine months as I have significantly deteriorated physically and I now need constant 24-7 round the clock support and assistance. My increased weakness and the fact that I need more care has put a huge burden on my parents who have a lot on their plate and are over fifty now. My whole body has significantly weakened and I can now do very little without help and assistance. My toileting and digestion issues have slightly stabilised and I am better at coping with them than before. Eating and swallowing have continued to become a bigger problem and it is causing many a headache for my parents and I. The things that I can do now have diminished significantly and I can only use the mouse a couple hours a day and not much else. Dealing with these problems puts a huge weight on my mind and makes me tired and extremely down. Even though it is extremely hard I am still trying to stay really strong and make sure that I don’t give up.
The last two month have been challenging for me, from struggling physically to feeling down and frustrated with life. Although I have accepted my life and learned to cope with my problems all the time sometimes everything gets too much and I get down and feel ‘why me?’, that is how I have been feeling the last few months.
I have been struggling physically over the last few months with my whole body feeling weak and my limbs being tight and painful. I have been feeling weak and tired over the last few weeks and have not been sleeping that well. My swallowing and toileting continue to cause me problems and it gets highly frustrating having to deal with the issues every single day. Everything else is pretty good and there are no new issues. Although my manual wheelchair is comfortable and working properly, I have been struggling with the foot plates over the last week or so. The foot plates have been causing me pain in my feet and ankles so hopefully I can fix the issues over the next few weeks.
One thing I have been struggling with for the last two months has been my mood and the fact that I have been feeling extremely down and slightly depressed. Just coping with all the issues sometimes takes it’s toll on me and normally I get better after a while with the support of my family. Hopefully I feel better in the next few weeks and I can go back to enjoying my life.
Until next time,
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.
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.
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,
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,