Daily I wake up to something new each and everyday it’s a being on a new roller coaster ride, each and everyday which is starting to become a bit tiring now. Sometimes resulting in an unexpected and or unexplained pain in a new part of my body and or swelling. I am sometimes forced to make use of my specially modified wheelchair throughout the entire day, at home as well as when we go out. As I am now needing help with most daily tasks. It takes every ounce of strength left in me along with physical help, when I am feeling strong enough and, when I am not as spastic. In an attempt to try and remain active, prevent muscle weakening and or possibly developing bedsores. I transfer out of my specially modified wheelchair for my Safety and comfort, into my armchair early in the morning. Which has had to be built-up with cushions for my comfort and safety with help. Then for walking I have gotten a pair of Airgel Ankle Support Braces. To wear with high ankle boots and or takkies as they are the most supportive shoe with help. To try and prevent possible sprains, fractures and or breaking my foot. Falling mainly on my knees in an attempt to try and protect my knees, I have also gotten a pair of Bendable Neoprene Knee Gaurds, both of which are available at Clicks and your local pharmacy. In the early evening I again transfer back into my wheelchair again using all of my strength as well as physical help. Which I use to go back to bed.
My first Respiratory check up since Covid-19 hit SA
Yesterday I visited the respiratory clinic for the first time since COVID-19 hit South Africa. Where I had a lung function test was first done, and my lung were relatively ok. When seeing the doctor where I enquired on how she felt about me purchasing a nebulizer. In the event the hospital goes under lockdown again. Who consulted with one of her superiors, who said that there is a risk of me becoming dependent it. She suggested that my preventer inhalers be changed, and also included spacer device. Being referred to the ENT clinic by the Respiratory clinic. I asked the doctor whom I saw what to do about the Septoplasty which I was supposed to have during COVID-19, she checked my Septum and she referred me back to the ENT clinic. As the Anesthesiologists postponed my first appointment, during the COVID-19 spike in June 2022. I will have to be referred back to the Anesthesiologists by the ENT clinic once again. As there were no real reasons, for concern she gave me a follow-up date for six months. Finally she rewrote my medication script for another six months.
Followed by a visit to the dietitian:
After being weighed and having gained approximately 605g. He showed me what a peg looks like and explained how it works. He however understands how important my independence, is to me and I am gaining weight. Although slowly he feels that it’s not necessary at this point in time. He just stopped the additional supplement, and no other supplementary changes were made. After the consult we met up with my youngest sister who helped us carry everything home.
Then off to pharmacy and OT:
After handing in my folder my mother waited at the pharmacy for my medication. While my youngest sister who had met us at Dietetics took over to me see my OT, where she checked my wheelchairs back rest. As a nut came lose. She checked my wheelchair, and decided that both my back rest, as well as my arm pads will have to be replaced. After which we went to meet up with my mother at the pharmacy. Where the pharmacist said that they had run out of spacers, and they made note of it in my folder. So that I will get it at my next visit to the hospital, I however got all of my other medication.
Ending of the day:
Finally we went to make my follow up medication dates at the reception area. Returning home just after three after a long and tiring day at the hospital.
Yesterday was quite an adventurous day for me, as I attended my youngest nephew’s athletics day which started at about eight o’ clock in the morning at Greenpoint stadium. Upon arrival at the stadium we couldn’t see any ramps up to the shaded area of the stadium my brother-in-law, swiftly lifted me up out of my wheelchair, and carried me all the way up to the top of the stadium. Then he and my brother carried my wheelchair piece by piece, up to the top of the stadium and reassembled it. So that I could safely sit in my wheelchair, while I constantly went into spasm. As he is the little guy is quite a shy guy. The mere fact that he bravely participated in the event, and ran his races made him a champion in his own right, to all of us who were there to cheer him on. Then after the event my brother-in-law again carried me down the steps of the stadium, while my brother and the rest of my family brought my wheelchair piece by piece and reassembled it, and I was once again safe in my wheelchair.
On Tuesday the 25 October I visited Grooteschuur hospital, where my mother went on to collect two months supply of my medication. As my youngest sister had taken time off from work, she accompanied me to the hospital and, took me over to visit my OT, as a screw had come out of one my wheelchairs armrests. We then proceeded on to the cafeteria to enjoy a quick snack, before attending my appointment dietetics and met up with my mother. After I was weighed I have gained approximately 100g. Still being relatively underweight. My dietitian explained to me that in the event, that I require some kind of medical intervention my weight would be taken into consideration. However as I would do almost anything to maintain the little independence, which I still have left for long as I possibly can. Including delaying the peg for as long as possible, as I know that I will not be able to maintain it on my own. Along with my meals. My dietitian has increased my oral supplement intake, from two cups daily to four cups daily. In addition to my existing supplement, he has also added an extra one of which I am to use five spoons of the powder added to my existing supplement. For that bit of extra energy.
After waking up one morning just about two weeks ago, with a severe pain. Which started all the way from my ankle leading down to the top of my foot, which just didn’t seem to go away after going to bed with just the usual aches and pains. As there were no visible signs of the injury. I simply assumed that I had sustained the pain while experiencing a severe spasm during my sleep. It has however impacted the little bit of walking, that I am still able to do even with assistance. It’s now becoming potentially dangerous for me to walk around especially as it becomes later during the day. As my spasms are increasing daily, and my movements are becoming more and more uncontrolled. Now leaving me almost completely wheelchair bound. Trying everything in my power to maintain my independence for as long as I possibly can. Including trying to exchange the two Orthofit Laced Ankle Support Braces, as I can only wear it while sleeping. As my OT had suggested that I exchange it for two Airgel Ankle Support Braces, which I will be able to wear with my shoes. Which could possibly support my ankles while walking. At the same time preventing sideways movements it would hopefully improve my stability and hence prolong my independence for as long as possible. As the store at which they were purchased at, were all sold out of the one Airgel Ankle Support Brace throughout the entire country they have issued a refund voucher. To be redeemed in-store.
Everyone has their own daily struggles to deal with. Especially those who are solely dependent on state grants, although they increase yearly. At the same time food and almost all other basic necessities increase almost daily. Without family who are willing, and are able to financially support them when and where needed. I am sure that it be a daily struggle just to make ends meet. Eskom has now started implementing load shedding, sometimes at short notice forcing us to live our lives according to a strict schedule. We get daily warnings that the electricity supply strained and that we should switch off all unused appliances. During the midnight and or unplanned load shedding, appliances are being damaged having to be repaired or replaced which just keeps adding to our daily expenses. Unless you are fortunate enough to be able to take out insurance, which often takes a while to pay out. We now have the added pressure of having to restrict our water usage as well. Although the municipality still bills us for just about everything possible. The poor are getting poorer. While the rich and those who are in power lead lavish unrestricted lives. This is however just my opinion on things I am sure that everyone has their own take on things.
After arriving at Grooteschuur Hospital at just before eleven am. We first handed my Hospital card in at the Female Incontinence Clinic. So they could take out my folder so long and prepare things for the doctors as they haven’t arrived yet. Then we proceeded on to cafeteria to have a quick snack and a nice cup of tea. Before heading to the dietitian, but the one whom I see had a meeting to attend, he instructed the receptionist to weigh me and issue me with more supplement. He also said that she must just rebook me. When I have another appointment at the hospital. I then proceeded back to the clinic to see the doctor. During he consult the doctor wanted me to have a blood sample to be drawn in order to check my kidney function. Again putting me on to the Botox list and took my mother’s contact details, as they are trying to cut out the tablet. Which I take twice daily. Hopefully I will one day be able to be treated with only the Botox. Before leaving the clinic I asked the nurse to help me sort out my Respiratory appointment time with the clinic administration clerk. We went on to OT to collect a referral letter for home based care from her. Then as she was the one who had suggested I get an ankle support from Dischem, Às all of the ankle supports look similar on the internet. I accidentally chose the wrong one which I thought would be the correct one. As I am unable to wear it with a shoe, and I will improve my walking. She sent a picture of the correct one to my cellphone, so that I can exchange it.
As I am relatively soft spoken and having a speech defect. My voice often gets drowned out by others. Then there is the fact that I am slowly becoming more and more dependent on those close to me, and or various support aids. Which are readily available to me at home. Making me quite an introverted person when around strangers. Not really enjoying social gatherings and or celebrations, unless it’s for those who are closest to me. I will try my best to put my own insecurities aside, weather permitting and how physically strong I am feeling on that specific day. Especially when it comes to celebrating my own birthday. The ideal birthday celebration would simply be enjoying a relaxing day in front of the television at home. Enjoying a nice tasty home cooked meal. Surrounded by only those who are closest to me. If they are able to make it if not they can simply call or send me a message via WhatsApp if they happen to remember.
Yesterday my day started at the Grooteschuur Hospital reception area at about ten where, I waited for my folder and got it reasonably quickly. After which I proceeded to the pharmacy to get my follow up medication also getting it fairly quickly.
After losing nine hundred grams in two months my dietitian, has suggested that I thicken the consistency of my supplement. He also feels that I should cut out spicy food, that I eat as I have acid reflux and esophageal dysmotility. My love for all things spicy, and the belief that I only have one life, which I plan to enjoy too the fullest. Eating bigger portions of whatever I want earlier during the day, along with taking my medication regularly, reduces my acid reflux and esophageal dysmotility.
Stopping at the canteen:
We then stopped at the canteen where we enjoyed a light snack and got something for supper.
Proceeding to OT:
Where I visited my occupational therapist to hand in my referral letter for home based care, to have it filled correctly. As she was too busy to fill the form in yesterday. I will collect at my next visit to the hospital. As the previous one was insufficient even though I am already receiving home based care. I also enquired about additions walking supportive devices which will hopefully help me maintain the little independence which, I have left for as long as possible.
After which I proceeded back the to reception area:
Where I went to make all of my follow up appointments. Leaving the hospital at about three. We returned home safely at about four.
It’s my belief that with positivity that I am able to face everything that life throws my way. Living with the hope of finding a treatment or a possible cure for the rare progressive neurological disorder, as well as all of the other chronic health issues which has taken over my life. As it continues to wreak havoc on my entire body. Waking up feeling like a brand new person each and everyday. I experience something new which complicates my entire life. Now I understand that more time, funding and research would obviously be given to all of the terminal and or deadly illnesses. Such as COVID-19 and HIV and Aids and many others. Although Dystonia and or other rare conditions may not be deadly, but they are equally debilitating. Which is why I feel that the equal attention, should be given to all rare conditions.