Chronically ill… Fibromyalgia

The long, unexpected, unimaginable journey with Fibromyalgia began in 2009 as I was busy with my honours degree in history. As difficult as the year was, I managed to pass the degree cum laude. The diagnosis was only confirmed in February 2010. I recall in 2009 as I was preparing for my winter exams; I had to go home in Ladysmith, which is about 420KM from Bloemfontein, because I was in such excruciating pain and needed the intervention of my parents. I got home, in pain and couldn’t explain what was happening. At that moment, the pain was mostly on my upper left back. The pain would be so severe sometimes that it would affect my whole left side, i.e. neck, arm and leg, and I’d have excruciating headaches. One time I woke up and couldn’t move my left leg. I cannot tell you how terrified I was. I started going to a physiotherapist, but had to stop when my medical aid got exhausted. Not that attending physiotherapy helped in any way.

I then went to the family Doctor, who only gave me light pain medication and some ointment that my mother would use to rub my back. So when I got back to Bloemfontein, there was no-one to help massage my back. The pain seemed to get worse. It occurred to me that this may be due to the mounting work at Varsity. In December, I went to a hospital in Pietermaritzburg (all alone) but there were no beds available, so I was booked for January. I decided not to go because there was a lot to sort out in Bloemfontein. At least that Dr ruled out a stroke.
I continued to go to doctors, I continued with the medication; until January 2010 when the pain was almost unbearable. This is when I was referred to a Neurosurgeon who performed all the tests one can think of; put me under these big machines (MRI scans) to check whether I didn’t perhaps have a brain tumour. His diagnosis, after all the very expensive tests, was a de-generating cartilage on my neck. According to him, this would get worse with age and probably when I’m about 50 years old, I will need an operation to replace the cartilage. Like any person would, this alarmed me. He then admitted me into hospital so that he would perform a procedure for pain block. However, for a day procedure, I was in hospital for about six days. I figured this is because doctors still couldn’t pin point exactly what was wrong with me, so they needed time to conduct a few more tests. As tiring and draining as it was, I had to persevere because I wanted to know what was wrong with me. It didn’t help much when my curious self, discovered that my admission documents stated that I had a brain tumor. I was almost sure that I was dying; but then a part of me still maintained that the doctor was wrong. A neurologist saved the day when he diagnosed me with fibromyalgia. He explained the syndrome to me and we together went through all the symptoms when we discovered that the only one I didn’t have was the thyroid symptom. I remember when I was in hospital how the evening nurses would keep me company when I couldn’t sleep. They did try to make my stay as bearable and as comfortable as possibly can. When I look back now, I realise how strong a person I am because I was away from my family. It is however important to note that my friends at the time were very supportive. This evil ailment is so crippling, yet will keep that smile on my face. It isn’t often easy for a person to tell that I’m in pain just by a mere look. Probably where the frustration of having to explain oneself, creeps in.

The neurologist prescribed Tramacet (which I’m still on), Celebrex and Cymgen. At first this medication made me terribly sick and I lost a tremendous amount of weight. My body was getting used to the medication when I had to stop because my medical aid got exhausted again. It was a battle once again. I had to use whatever was available to me so I could at least regulate the pain. My parents were getting frustrated with me, especially my father whose medical-aid had to pay for all these medical procedures. When the medical aid got exhausted, I didn’t want to bother him anymore; so I used whatever I could put together to get medication. Sometimes even headache tablets were enough to betray my back pain. When I started working in December 2011, getting medical aid became priority.

I am a black South African (who happens to be cultural), so we have quite a number of beliefs and customs, especially on our ancestors. So my family believed that this sickness was nothing medical; especially when my left arm and leg would get swollen, numb and at times totally give up on me. They highly believed that this could only be explained by traditional healers. So that’s when I started my journey with prophets, sangomas (Traditional healers), priests, etc. Of all the twelve people I visited, they all told me different stories. I remember the first man I visited in Johannesburg told me that someone had bewitched me at school, which is why my left side is so painful. I paid a lot of money, out of desperation of course; however, not even my faith saved me on that one. I remember he gave me water that he had prayed for. I used that water religiously. I dabbed a bit of it into my bath water, I drank some of it and also would sprinkle a bit of it in my room to chase away bad spirits – because I also used to have bad dreams. In all honesty, the bad dreams stopped for a while, but the pain never went away.

The next person I went to, told me this was due to jealousy from my extended family members. He also told me that I wouldn’t be able to bear children. It was nothing new, as the neurologist had told me that if I thought of having children, I would have to change the medication I’m on as it would not be good for the foetus. I remember he also told me that I would have a painful pregnancy due to the severe back pain. I honestly wasn’t worried about making kids at the time. In any case, the man I went to, gave me herbs and some concoction to drink. I would steam a lot, pray – asking the divine powers to heal me – and did all he said I should. I got better for a week or two – in all honesty, period pains stopped; but the pain still didn’t entirely leave my body. He however stressed that I should be weary of people who will want to mislead me into initiating/training as a sangoma. According to him, that would be a way to get my desperate self, to pay amounts of money to them. Of all the things this man said to me, I highly appreciated this one. I do not want, in any way to belittle traditional healing; I have so much respect for the practice. The only reason I keep going in and out of these places, is desperation and that ounce of belief left in me – I should stress that this has been enough to carry me through tough days.

One lady said I should not let doctors perform any operations on me, and prophesied that one doctor will actually take me to a “mad house” because they will think I’m demented. It was in 2012 when I went to a psychiatrist. She told me that she will admit me into a hospital so that they could run some trials on me. Little did I know that I was going to a psychiatric clinic. I felt trapped and betrayed because I had not prepared myself for such. I had to be in the “mad house” for two weeks. The first two nights in there were terrible; I cried because I felt like no-one believed me. I felt like they think I’m crazy for saying I’m in pain. It was then that I realised that one of the prophets saw this coming. To this day, I do not understand why that Dr took me in. I came back still in pain; no psychologist saw me; and I had my laptop the entire time, so I still did my work. I felt lonely and out of place. I listened to other people go on about their problems, what they’ve had to endure and not once did I share with them personal testimonies. When we didn’t have to do group activities, I sat and watched TV. The ladies even had a nickname for me. I remember on the first night I even called a friend and asked her to come break me out. Security was too tight, so I was afraid I’d get arrested. They put it in bold that this was a criminal offence. The only sessions I’d look forward to, were with the physiotherapist. I still go to her even now. She understands my body more than any other doctor; she also believes in miracles and tells me that she prays and hopes one day I’ll get healed. The psychiatrist prescribed Epleptin, Trepelin and Zolpidem. On my sick note, she wrote – Severe Depression. Yes, maybe being in so much pain depresses me, but I doubt I’m severely depressed. I however am thankful for the sleeping drugs. I was on these for about 4 months when I realised that they only tired me up and made me eat too much. So I stopped taking them because they weren’t doing any justice on my pains. She didn’t check up on me after I left the clinic. To this day, she doesn’t even know whether I’m alive or dead; this makes me think it was all just about money.

And then it went on and on. I went to doctors, pastors, traditional healers, chiropractors; I did yoga, let my faith take over. One time, a colleague invited me to her church. I attended every Sunday and it was a happy space for me. One day I decided that when the pastor called the sick to pray for them, I’d be brave enough to go to the front. I did as planned. There was one lady who was blind, he prayed for her and after that, she testified to seeing shades. He then went to pray for a lady who had demons. He cast them out of her. When my turn came, he asked me to point where my pain was. I held my back, then he prayed in tongues and blew some air. A minute later he asked me how I’m feeling. Now at this moment, I was still in pain, so I was honest with him. He continued to pray and the third time asked me to sit down in sheer annoyance. I could sense that he wasn’t pleased with me. I still see his displeased face to this day. After that, his whole sermon was based on believing, so you can be healed. Basically, he was telling me that because I do not believe, I will not be healed. I went back home, praying to God, asking for His forgiveness so that I may also find healing. It was a difficult time for me, but I was also angry with the pastor who insinuated that my faith wasn’t strong enough. After this, I decided to go back to my home church – Anglican Church. I however realised that when people learn of my sickness, they often preach to me about my faith and the power of healing. This makes me introspect a lot, but then angers me so because these people have no idea what they are talking about. One pastor on Facebook even told me that I’m not a believer.

It was in December 2013 when my grandmother decided to intervene. Everyone at home decided to be sad all over again and question why God would allow pain to go on for this long. I wasn’t even phased by this because they do it all the time; none of it consistent. I’ve decided that it is because they get fed up and seriously do not have enough patience for all this dilemma. The lady my grandmother called, spoke about the source of this being family – not in terms of witchcraft. It then dawned on me that the two psychiatrist I visited, kept asking me questions about my childhood and the second prophet I visited also alluded to such, as well as a traditional healer from Ladysmith who even said I should perform a ceremony on behalf of my mother. Due to the sensitivity of all this, I will not dwell much on it. However, she stressed that it had an emotional bearing on me and subsequently on my health. This stressed me a lot more. Childhood memories kept crumbling back, almost suffocating me. I remember I got into my car and just drove; totally got lost, and returned to drive my grandmother home. She kept telling me not to be resentful; all that just went in through the one ear, and out the other. Everything just suddenly made sense. I knew then that maybe this was more emotional than anything. We are the sum of everything, after all, our souls and bodies are intertwined.

Along the years, I’ve tried YOGA. It was too painful and actually made the pain worse. I also started wearing pain patches, which didn’t help much even combined with my tramacet. I also at some point went on a gluten free diet, cutting on almost everything. This was very expensive and showed no significant results in the two months, so I stopped wasting my money. I sometimes have terrible muscle spasms, almost like epileptic fits. I had two episodes in a period of three months. I’m not sure whether it’s the medication, or anyone else with fibromyalgia has had such an unfortunate ordeal happen to them. It terrified me so much, after those episodes, I’d avoid sleeping, although I was extremely exhausted from all the severe spasms.

I have very few close relationships. I hate having to explain to people what is wrong with me, or even having it reduced to back pain. My family also help at times, but I often don’t tell them when I’m too sick. I think they get fed up with this. It’s a hype for a little while; you will have everyone praying and volunteering to massage my back, then a week later, everyone is close to giving up and I must continue the fight all on my own. It’s been a difficult battle, but in everything, I try to look for the silver lining. I love working, although there is too much pressure at work, but it gives me joy knowing that I managed to finish something all on my own. Something about it just says super woman.

Early 2014, my grandmother took me to the lady in Johannesburg. She made me do so many things and had to bath in hot water, while she prayed for me. Also had to drink something she put together. I must say, that medicine she gave me, helped with my iron levels. I was able to donate blood for the first time in May 2014. I had to tie a belt around my waist which she had prayed for. She told me I’d have to wear it for three months then come back to her. She also prayed for my wellbeing and that I find a stable relationship. I prayed with candles as she told me, went to church and things seemed to fall into place, but the pain wouldn’t go away. In July, I had a severe breakdown. I was a walking zombie. I actually do not remember what happened in those two weeks. My colleagues tell me I couldn’t even speak properly. But funny enough, I managed to do all my work. I then went home to recover. My uncle took me to another lady from Zion Church. She gave me something to drink for the few days that I was home. My pain went worse. I couldn’t sleep, I even cried at night because it was unbearable. My uncle told me that this was the pain leaving my body. I believed him and continued with the medicine. Before I went back to Bloemfontein, she gave me a string to wear around my waist. Now at that time, I had two that I was wearing. When I got back to Bloemfontein, two days later I got into an accident. The lady from Johannesburg told me to come back to her so we could finish what we had started. When I got there, she told me I wasn’t supposed to go so long without finishing what I had started. I then had to apologise to the spirits for breaking the rules. She also told me that I need to grow my hair because no female should have a shaven head. I told her I would do so, but also stressed that I do not like hair. She gave me a white string for my waist and told me never to remove it. So when I got to Bloemfontein, I burnt the one I had received from the lady in Ladysmith.

Pain hasn’t left my body. My medical aid is exhausted now and I still owe doctors money for some procedures that my medical aid could not cover.
In December 2014, my Chiropractor told me about a certain Homeopath that I could visit. So I did pay her a visit as suggested. She consulted me for about an hour, which I honestly appreciated as it suggested that she was patient with me. She asked me about myself, my life and what period in my life was the hardest. In the end, she told me that she believes my fibromyalgia stems from certain events in my life when I was growing up, which I haven’t dealt with. A whole lot of emotional pain which I need to deal with, otherwise I’ll never heal because it will keep coming back to haunt me. She said we would focus more on them in my next visit. She used a machine that would relieve me off pain for some time and gave me so much medication. I will call it medication because I don’t know any other term for it. It was about 12 little bottles and about 3 sets of pills. But this medication tastes like sugar water and then one bottle which tasted like something a sangoma would have given me. It was all so bitter. She told me the medication would focus on my liver, my kidneys and give me energy. In all fairness, I left that house with no pain in my body, unfortunately it was short-lived as it returned about 2 hours later. Sadly, she doesn’t accept medical aid (which at that time was exhausted anyway); so that meant I had to separate with R1800.00. Oh how my heart sank. Since visiting her, I have had bad dreams, the pain has been mounting, but my faith at the same pace too. I have a supportive partner – so the lady’s prophecy has been fulfilled. Although I think this may also be too much for him. He certainly didn’t sign up for this and at times I do not want to bother him with my stories of pain.

I hope this doesn’t affect me for the rest of my life as previously said by doctors. I’d like to heal so I can also have healthy relationships with people close to me. For a long while, I tried to convince myself that I don’t ever want to get pregnant, but I know that this was only so that I start to believe it in my mind and heart. At the moment, the thought of pregnancy still terrifies me as I cannot imagine how much more pain I’d be in if I were to fall pregnant.

I hope that this awareness makes the Doctors realise that this “disease” is real and they should take it seriously. In South Africa, there isn’t as much knowledge on the sickness as there is in first world countries. I really wish there was a support group I’d go to, especially of people that would understand more on the African perspective. There is still so much to tell, and I think my story is unique when it comes to the cultural beliefs. Having most people think I’ve been bewitched or I perhaps have an ancestral calling has made this, although interesting, but more of a high mountain to climb. My family still believe that I can be healed through divine powers and that a miracle is waiting for me only if I practice certain ‘rituals’. No-one understands the gluten-free diet, no-one understands why I don’t party or drink anymore, no-one understands why I choose not to have babies and they just don’t understand the pain that I have to endure. I however don’t expect them to, nor seek their pity. I have been fortunate to meet a few people on twitter that have the syndrome. It reminds me that I am not on my own, someone understands my pain, and there sure are people with far worse pain out there. This is my journey with fibromyalgia. A journey of desperation, tears, pain, despair… but a journey nonetheless. Many people have said that I haven’t been healed simply because I do not believe. In the past, I would have wished that they experience just a bit of this so that they know exactly what I mean; but in all honesty, I could never wish this upon my worst enemy. This is one of the worst things any human being could ever go through. It’s expensive, it’s bearing emotionally, financially and basically on one’s quality of living.

The worst thing you could do to a person who has a chronic ailment, is tell them they are not healed because they do not believe…

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