My Life With Autoimmune Diseases

I have always been an energetic, positive person all my life. I never turned down an opportunity to live life to the fullest. Being in the teaching profession, my entire life was geared around fun-filled days playing and chasing after my students. I had no problem getting in on a soccer game or playing tag with my students at break. I considered myself a young and energetic go-getter who knew no limits.

This was my life until a couple of years ago. People would always comment on my energy levels and my optimistic outlook on life.  I could take on any number of tasks and often over committed myself but I had it all under control and always got the job done.

The Symptoms

About four years ago I started slowing down a little. I found myself avoiding very strenuous tasks because I just didn’t have the energy levels that I was used too. I was not too concerned at this point because I was already in my forties and assumed that as I grew older, it was natural to tire more easily and slow down in general. What I did not realize was that I was slowing down a lot faster than the average forty year old. I started struggling to get out of bed every morning because, even though I had a full 8 to 10 hours sleep… I was still exhausted.

After a couple of months of chronic fatigue, I decided to seek medical help and visited my GP. After a 10 minute consultation, he had concluded that I was suffering from burn-out and depression and that all I needed was a vacation. He booked my off of work for a week and told me to take it easy. He prescribed some Vitamin B tablets and a mild anti-depressant.  (At no point did I feel depressed but took the medication as I was desperate to get back to my old energetic self) After a week in bed and feeling no better, I returned to my GP (This time, really depressed) and he diagnosed me with chronic burn-out and depression.

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He upped my dose of anti–depressants and booked me off of work for another 2 weeks. After 2 weeks of rest I felt a little better and decided to go back to work. From that point on, life has been a continuous struggle. After 6 months, I decided to give up the antidepressants as I felt that I did not need them… I knew that there was something else wrong.

A few months later, I was back to square one! I was exhausted all the time and could not cope with simple tasks like sitting at my desk at work. I would wake up exhausted, drag myself out of bed and literally dragged myself to work. By 9 am, I could not keep my eyes open and felt this heaviness come consume me. On some days, I could not even drive myself home and had to call someone to collect me from work. When I had these episodes, I would spend day in and day out in bed. No amount of sleep made any difference to my extreme fatigue.

Guilt

To add insult to injury, I developed serious Psoriasis and the skin on my entire body was red and extremely itchy. I developed large, unsightly patches of this skin disease all over my body and honestly felt like a leper. I hated and could not stand the sight of myself in the mirror, Soon immense guilt set in as I was no longer able to function at work, or as a mom to my child or a wife to my husband. It was at this point that I realized that there was something drastically wrong.

I made an appointment with a dermatologist who was able to get the skin condition under control with debilitating cancer treatment. Six months later, the Psoriasis cleared up and I started feeling a little better. Fortunately, my employer was sympathetic and I still had a job to go back to. I returned to work, but  as the fatigue that had engulfed my life returned with a vengeance, I could only manage the bare minimum. Soon my absenteeism began impacting my work performance.

“The more I stressed, the worse my symptoms got”

Looking for answers, I began to think that this was possibly the onset of early menopause and that all my symptoms were hormone related. A few months later my stress levels increased as I slowly began falling further and further behind on work and home tasks. The more I fell behind with tasks, the more I became stressed. The more I stressed, the worse my symptoms got.

One morning I woke up with incredible pain in my neck and shoulders. I assumed that I had just slept wrong and brushed it off. Day by day the pain got worse and soon I had pain in most of my joints. My hips ached at night; my neck was stiff and sore; my wrists hurt and in the mornings, I could not even hold a cup of coffee as my hands were stiff and painful. At first I assumed it was the process of aging but when things got worse I went to see a GP. 

The first doctor treated me for joint pain with cortisone injections but these only helped for a very short period of time. After a few consultations and not getting much relief, I went to another doctor who suggested that we test for the more serious auto-immune diseases such as Systemic Lupus, Rheumatoid Arthritis, Inflammatory bowel disease , Psoriasis and Multiple sclerosis. Up until that point, I had never heard of autoimmune diseases.

I left the doctors office feeling a little apprehensive as he did not go into detail about what an autoimmune disease was so I decided to do some research on my own. What I found on the internet was nothing short of a life of pain and suffering and then eventually, death. The news petrified me so I decided to ignore the doom and gloom and opted to convince myself that there was no way that I had any of the diseases that I had read about and therefore had nothing to worry about.

The Diagnosis

A few days later, the doctor called and asked me to come in and see him about my blood test results. I knew then that something was wrong. I went in the following day and the doctor told me that my tests indicated that I had one or more autoimmune diseases. It felt like my entire world had come to an end. I had no idea which of the many autoimmune diseases I had and it didn’t matter. All I knew was that these diseases were incurable and all lead to a life-time of pain and anguish and that is certainly not how I had envisaged leading the rest of my life.  The rest of the doctors appointment was a blur. It was like a bad dream and no matter what he said, I just wanted out!

The next few days passed by and I fumbled through them without being conscious of much. I was numb. I did not think about my results; did not allow myself to feel any kind of emotion and just went through the daily routines like a robot on auto-pilot. It was not until the second round of tests, scans and specialist appointments that this situation became real to me. Fear and utter helplessness suddenly set in and I felt that I had no one to turn too. The doctors treated me with the same compassion (or lack thereof), that one would have with someone who had flu. The specialist confirmed my worst fear … not only did I have more than two autoimmune diseases but I had one of the worst – Systemic Lupus Erythematosus.

“I had been given a five year death sentence”…

I spent the next couple of weeks reading and researching extensively about these diseases and every single website gave a very bleak prognosis. The more I read, the worse I felt. My symptoms became unbearable and eventually the specialist put me on a course of drugs that were FDA banned in the United States. Upon further research, I became aware that the drugs used for treating autoimmune diseases, especially Lupus, were the cause of most deaths within a five year period. I had been given a five year death sentence.

In the early few weeks after my diagnosis, I did everything the doctors told me to do and took all the harsh drugs that they had prescribed but the side effects were worse than anything I had ever experienced. I was jittery, could not think straight; had problems with my vision and my hands and voice shook uncontrollably. It was so bad that I could not leave the house. I was unable to face people in fear of what they would think of me. I honestly looked like someone who was on drugs (and rightly so).

After just two weeks, I could not stand the side effects any more and feared that the drugs would be the cause of my death. My heart had been affected and I genuinely feared for my life. On a positive note, I was no longer in pain but I had to choose between the pain in my joints and the effects of the prescribed drugs. I decided that even if I lived in pain, I would at least be alive. I stopped all treatment and within hours, felt like a new person.

Looking for Alternatives

This was when I decided to seek alternative treatment. I started researching the options available and immediately recognized a pattern. In almost every article I read, medical cannabis was suggested in the treatment of severe diseases.

It wasn’t until the next severe inflammatory flare up that, in desperation, I decided to try medical cannabis  to relieve my symptoms. A good friend of mine took the initiative to order a month’s supply of cannabis oil tablets (legally supplied on the internet) and gave them to me to try. The results and the relief were almost instantaneous. Within a few days, I was pain free and my Psoriasis had started clearing up. I was able to get a full night’s sleep and woke up feeling positive and ready for the day’s challenges. That first month, I felt mostly like my old self again. I still struggled a little with fatigue but was able to get through a full day’s work. 

I have now been pain free and Psorisis free for the past 3 months. My chronic fatigue has subsided and I get through most days trouble-free. I do have a bad day here and there but I have accepted that this is just the way my life will be. On the bad days, I sleep in if I have to, or leave work earlier to get in an afternoon rest. I have learned to say ‘no’ when I need to and have learned to pace myself. I keep stress to the minimum and force myself to take note of the little things in life that matter. As I wake up every morning, I count my blessings. When times get tough I tell myself that I am only human, that we all need to take things one day at a time and that we should not beat ourselves up if we are not seen as ‘super-human’.

If I can give advice to anyone, it would be this:

  • Lead a balanced life – too much of anything is unhealthy
  • Relax – your body needs time to recharge
  • Let go of that you cannot change – everything happens for a reason
  • Acknowledge that you are human and not super-human.
  • And live life with a heart of gratitude. Relish in the joys of life
  • Stop to smell the roses
  • You only live once so make it count no matter what your circumstances are.

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