One of the reasons why I wanted to start this website is because I realise that there are probably others out there who fall into the same category as me. That category being a person with multiple individual illnesses and/or disabilities that sort of means we don’t fit into the ‘run of the mill’ support groups for a particular illness and disability. I find it really helpful talking to people who have had similar experience with an illness or disability, but for me I often find that I then have all these added complications as a result of other conditions that they simply don’t understand.
I hope that those of us in the multiple illnesses and disabilities category can come together to support one another, and share the ‘tricks of the trade’ we have discovered.
Furthermore, it is my hope that this website would be helpful for those who are supporting people in this category. I hope supporters can gain a better understanding of what is like living with multiple conditions, and come away feeling better equipped to support those individuals in your life. It is important to remember, that everyone is an individual and what is helpful for some, may not be helpful for others.
For those of us who are Christians we do know that it is important to support one another during our journey through the valley, but ultimately our greatest source and comfort comes from our Heavenly Father. We have to remember that Jesus experience that greatest suffering by being separated from God, whilst dying on the cross for our sins, so that we could have a relationship with our Creator, who knows exactly what we are suffering, and will give us what we need throughout this journey.
As for me, I have been diagnosed with a disability and four other life long medical conditions, only one of which can be linked as a result of another condition. These conditions include:
- A disability – I am blessed that my form of disability is mild, and only really affects the right side of my body (although both legs). I am mobile but experience muscle aches and cramps when I walk. I am at a high risk of falling over, as I’m not that stable on my feet. I also have half the function of my right hand. I have been informed that I may have a degenerate form of my disability, which means that other muscles in my body may overtime deteriorate
- An autoimmune disease – When I was a teenager I was diagnosed with an autoimmune disease. It causes severe abdominal pain. In the past it caused my hair to fall out, arthritic pain in my joints, and at times I simply couldn’t eat food because I would just start vomiting. Many years ago I had surgery to remove some of my bowel, but the disease has re-emerged at various points over the years, mostly causing severe abdominal pain.
- Brittle bones – This is a condition where ones bones become brittle and break easily. This disease runs in my family, although it may have also occurred as a result of being on immunosuppressant medication. As I am not stable on my feet and fall over a lot, I have broken many bones. In fact, as a result of my disability my metatarsals are bent, and with fragile bones, I run the risk of cracking my metatarsals simply by putting my foot on the ground.
- Mental Illness – I have been diagnosed with several mental illnesses over the years. I don’t have all these illnesses, but it’s been a process of trying to find the right diagnosis. My mental illness means that I am plagued with intense suicidal thoughts. I have extreme emotions, where one moment I’m fine and the next I could be overwhelmed with negative emotions. I can feel I’m worthless, and there is no point to my life. My mind can become so confused that it feels like it’s flooded with a thousand different thoughts. Yet at other times I can become so numb.
- A hormonal disorder – This disorder is linked to the hormonal levels in a female’s cycle. The hormone levels cause one to become intensely suicidal, have insomnia, intense muscle aches and cramps, mood swings, become extremely anxious and depressed, and fatigued (this is a permanent state for me given all my conditions). This disorder pretty much is a combination of symptoms of all my conditions, and it means that I struggle to know what condition is causing what symptom.
In summary, my days can pretty much be summed up as either being sore or suicidal or both. As a result of all these conditions, I spend my week going to various medical appointments. I’m currently on the books of four specialists, and see six allied health professionals purely for all these conditions. This list does not include things like a GP, dentist, optometrist etc. that we all need to attend at times.
For those of us who are Christians, as we go on this journey of constant medical appointments and receive more and more illnesses, we need to remember that our diagnosis isn’t what defines us. What defines us is what God says about us, that we are chosen in Him, redeemed by a Saviour and a child of the King who loves us!