My physical disabilities & medical conditions
Firstly, I am hard of hearing due to two medical conditions. I have had issues with my hearing all my life, which has gradually gotten worse. I have had to fight all my life to prove I had something wrong with my hearing. From a child I was called “stupid,” “a liar,” “slow” & much worse. Some of these comments came from doctors, teachers, etc. At one point during my early adulthood a so–called consultant on hearing said I was insane. Saying that the symptoms I claimed to have were not possible & that I was “crazy,” & that if I came back again he would have me arrested. This of course, affected my confidence in fighting. It was several years before I continued my fight to prove I had something & that I was not lying or crazy. It took me almost 36 years, from the age of 2, to be diagnosed with a hearing condition that actually had a name.
- I have Tinnitus. I have had this all my life. As I child I thought it was normal, that everyone had it. There is a continual ringing in my ears, & other sounds. The volume differs from what I feel is manageable to a very high level that can render me, for all intense & purposes, deaf. The pitch of these sounds also differs. Also, from manageable to high–pitched. This too can result in being unable to hear at times, & also causes considerable pain.
- The second hearing condition I have is Ménière's Disease. One of the symptoms is vertigo. That is not a fear of heights as most people think. It is dizziness. It can be mild to moderate, to severe. Again, most people think they understand what this means, but this is not the typical type of dizziness. Imagine being sat or laid down & feeling you are losing your balance, that the room is spinning, feeling physically sick. The effects can last a few seconds, minutes, hours or even days. It can have a very debilitating affect.
I am still dealing with the anger I feel at the indifference, even negligence of the medical profession for all those years. Also at school as I was seen as a trouble–maker or lazy. I was never offered the help I needed to progress at school, to do the work assigned during classes. I often could not hear clearly, especially with all the background noise. It was also difficult to read the blackboard or books. Writing was a challenge for me at times too. I have failing eyesight. Glasses help, but it seems the Ménière's Disease causes a problem. I used to need just one pair of glasses to see generally & for reading. Now I need two pairs, one for general use & one for reading. This, however, has resulted in causing me to go dizzy when I wear one of these pairs. This means I have so far had to use glasses that are not as strong as required, & therefore my ability to see has been considerably reduced, to the point of being partially sighted. Often I say to people I am half blind as people sometimes need to be shocked into actually realising I find it very difficult to see, even with glasses. In the autumn of 2003 I had a very bad virus. It lasted for weeks. I did not recover. I was left with some form of Chronic Fatigue Syndrome/ME, which I am still fighting to prove I have. Part of the reason is that when I was final seen to be diagnosed some of what I said was ignored, therefore my full symptoms were not taken into account.
In the end I did finally see a consultant who listened to me, accepted what I said & gave me some hope. What makes it worse though is that both of these conditions were known about before I was even born.
Most people think CFS/ME is just being tired, that we should try harder, or then we are even using it as an excuse. It is now accepted as a legitimate medical condition, even if some medical people have yet to catch up with that. It can leave me physically &/or mentally exhausted trying to perform the simplest of tasks. The best way to describe it is like trying to drag your feet through snow that is up to your knees. It also causes pain in my joints & muscles, this too restricts my physical abilities such as walking, getting dressed & undresses, showering, cooking & other household tasks, etc. These are some of the main symptoms I have. I have also developed Physiological Action Tremors. The best way to describe this condition is to say that my hands, arms, feet & legs shake & jump. I might be holding a fork & end up throwing it across the room. I might try to pick something up & miss, several times. When trying to put something down I may miss & it goes on the floor. Writing is very challenging, due to this & other medical conditions. Holding a pen is very trying, but when it comes to writing in a legible way is something that takes me a long time. It can take me several days or even weeks to write an address on an envelope. Of course, other daily tasks are very trying too. The next one is Peripheral Neuropathy. The easiest way to explain this is to say it leads to paralysis in my hands, fingers, feet & toes; weakness in my muscles, pain, pins & needles, burning feelings, lack of co-ordination, lack of manual dexterity. This leads to further complications in performing any physical tasks. Another condition I have is lymphoedema in both my legs & feet. It is worse in my left leg & foot. This makes it extremely difficult for me to walk, not that you can call what I do walking anyway. I have to use a sock–aid to put socks on & to take them off. I cannot wear most footwear. I wear sandals, even in winter. I use Velcro straps to lengthen the straps on the sandals, as the standard width of the straps is not long enough.
This is just a basic idea of the many medical conditions that I have & a general understanding of how they affect me. Most of them are manageable on their own, but when you put them together their affects are magnified, making it very hard to control their impact on me.