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Living with Autoimmune Disease

Living with Autoimmune Disease

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Disclaimer: This is by no means a medical opinion or advice for you to follow. It is my personal experience in terms of living with my Autoimmune Conditions and if you have health issues please consult your medical practitioner.

I didn’t think I will share this post “Living with Autoimmune Disease” but a few readers have asked me to share my journey in respect of my Autoimmune conditions. It is also Thyroid Awareness month so I guess it’s fitting to share my story.

To be very honest I was reluctant to do this. Firstly, I am definitely not someone that follows any special diets or pay any particular attention to the fact that I am living with these conditions. I have no quick fix or solutions for you but I am giving you a very candid account of my journey. 

Maybe my journey is different because I have been through so much pain in my life that I never really had time to focus on my Autoimmune disease. This only just occurred to me now because nobody has ever asked me to share my story before.  

Often people think that if you don’t display any physical symptoms of a condition you are actually fine. Even my own husband will never quite understand my symptoms. My family have taken it for granted that I wake up everyday and get going. Whether I experience pain, fatigue, anxiety, mood swings amongst a million other unseen symptoms, it doesn’t matter. Unless they cannot see anything physically wrong with me it is assumed I am perfectly ok.

Often I am not perfectly ok. In fact I drink a cup of strong coffee every morning before I get out of bed. It’s the only way to wake me up, I promise. This is not recommended by my medical practitioner but it works for me. There is no other way! Please do not follow my advice.

Living with Autoimmune Disease

Living with Autoimmune Disease

Thyroid?  I didn’t even know what a thyroid was when I was first diagnosed. I was a naive 20 something woman. Since I was a young girl I was rather skinny and somewhat underweight. So when I became even more skinny after my first son was born I didn’t really give it much thought.

One day a colleague saw me and she looked at my eyes. She said “you look very thin and from what I see looking at your eyes you may have a thyroid disorder”. I wasn’t quite sure how to react to that but she assured me that I needed to go to a doctor. She, herself was diagnosed with hypothyroidism just a short while before.

I took her advice and saw a physician specialist. As I said I was young and totally clueless. There was no google then so I wasn’t able to check my symptoms or get “advice”. My incompetent physician specialist asked me to do a blood test. He got my results and said my thyroid was over active, not just over active but way over active.

What did I understand by that, zilch. All I know is that it had a direct impact on my hormones and that was the sum of my knowledge. He suggested I see an Oncologist. After my first appointment I was given a dose of radioactive iodine. However, he was supposed to wait at least 6 months before testing me again. But he tested me in a month and said it was still very over active and sent me in for a second dose of radioactive iodine.  That was the end of my thyroid gland. It was completely destroyed. I don’t recall experiencing too many symptoms. Maybe I was just lucky. Or maybe I was so consumed with a bad marriage and the loss of my baby that I never really stopped to think about my symptoms. It was during that time I was also in my early stages of pregnancy which I didn’t know. I had to terminate my pregnancy due to the radioactive iodine. It was a traumatic time for me but I focused on work and tried to get through it all as best as I could.

I was then put on thyroid medication and continued with life as normal. It took many trials and error before my doctors got my dosage right. Of course because I no longer have a thyroid gland I went from hyperthyroidism to hypothyroidism.  It’s no longer over active but now under active. One day before moving to Johannesburg I wasn’t feeling great and I saw my family doctor. He took some bloods and said my blood results look a little abnormal. We were moving the next day so I couldn’t see a doctor in Durban. 

Once we moved to our new home I had to see a doctor as soon as we arrived in Johannesburg. At first the doctor assumed I had Lupus but on further investigation I was diagnosed with Sjogren’s Syndrome.  Sjögren’s syndrome is a long-term autoimmune disease , it affects the body’s moisture-producing (lacrimal and salivary) glands, and can have serious affects on other organ systems, such as the lungs, kidneys, and nervous system. It is a slow progressing disease and I will have to treat my symptoms as they come along. 

Yes, I know many say with hypothyroidism you gain a whole lot of weight and why am I so skinny. To be honest I cannot tell you why. Maybe it’s because I don’t have a thyroid gland at all.  Or maybe because I had hyperthyroidism. I have tried to research it but I can’t find much on the weight aspect and not having a thyroid gland.

I don’t follow any special diet.  I do eat chicken, fish and veggies but I don’t eat red meat. I believe that I have to have a balance in my life so I eat anything I fancy but I eat it in moderation. There are days when I love eating but most days I eat small portions of food. I snack on fruit or nuts in between. I love cake so yes if I have that in my kitchen I never say no. But I am seriously trying to be more disciplined in terms of anything fatty or sweet. My doctor did warn me that thyroid patients are more at a risk of having a heart disease so I am being a little more conscious.  Nothing else that’s special about my diet. Here again I think I am just lucky. Although I don’t over-indulge in stuff that’s not good for me, everything I eat is in moderation.  I do not eat red meat but I do eat fish and a little bit of chicken. We do eat a lot of veggies.

As for the fatigue I keep busy. If I ever laze about even for an hour I am totally fatigued for the rest of the day. I therefore try to keep busy for as many hours in the day as possible. My kitchen is my sanctuary. I hate exercising and although my doctor insists I should. Can you imagine being so fatigued and on top of that trying to exercise.  When I do I have to literally collapse in bed straight after. The most I ever do is a little walk…Lol! But I do a lot of chores and I am busy in the kitchen most of the day. I think that’s enough exercise.

Let’s talk anxiety!  I suffered with a lot more anxiety than I do now, together with brain fog, when my dosage in terms of my medication was not correct. Once my doctor got that right I started feeling a lot better. I still experience little bouts of anxiety but I am a lot better than I was.

I don’t take too much medication, apart from my thyroid medication, the only vitamin I take is Vitamin D. I have some anti-inflammatory pills for pain every once in a while. Sometimes some drops for my dry eyes and I have to chew gum all day for my dry mouth. 

The number one trigger for my conditions is stress. If I experience a little more stress than usual, yes, I have a fair amount of stress in my life, it does impact on my health. It’s the only time I get really ill and then I am forced to stay in bed for a few days. However, at least once a month I become weak. Sometimes I am lucky and skip a month. I am completely drained of all my energy, for absolutely no reason. On those days I cannot function at all. I lay in bed for 2-3 days. Luckily, here my family understands and my hubby helps take care of our home on those days.

Sjogren’s Sydrome has dried up my eyes, I have a dry mouth and I experience severe headaches. I also experience chest pains from time to time, however I have had this checked and I was told all’s fine. I had a flare about 2 years ago and I had to be hospitalised. It was the only major flare I had since I was diagnosed almost 10-years-ago. But this flare was enough to shake me up for a while. I was literally not able to function for almost 2 months. I had absolutely no energy, I experienced terrible insomnia and chest pains. I honestly thought I was dying and went into severe depression. 

I lived on lots of healthy greens and drank a lot of smoothies during that time. It took me a while but I slowly got my energy back and I was finally back to normal again. I still experience a lot of chest pains and some major pains in my legs. I have learnt to work hard when I can and rest when I need to. Taking one day at a time in terms of my health is the best I can do. 

The thing that keeps me sane is the fact that I try not to think about my conditions. Maybe I am in denial but I prefer not to think about it too much. I keep busy and I keep my mind busy by learning and growing everyday and honestly I don’t know if this is the secret to me being sane but it could very well be.

Life has taught  me not to think too much into the future. Stressing about it is not going to make it easier and thinking too much about the future is going to drive me insane. I count my blessings for every good day I have and I lie in bed on every bad day and get my hubby to wait on me…LOL! Thankfully my bad days are few and far between. 

Of late I have been feeling a lot more fatigued than usual. I think it’s my age catching up with me. I have been slowing down and only doing as much as I can. My doctor, that I’ve been seeing for a few years now, stresses how important exercise is. I know just how important it is but I wish he could try exercising whilst he is totally fatigued…haha! When I do try straight after exercising I will have to get straight to bed. For me, keeping active all day works.

Yoga also has helped me a lot. I did go to classes for a very short while and then I tried to do some at home. Of late I have not done much but it’s on my list to start again. It’s the one thing that has helped with my energy levels and helps with stress.

 

If you are not feeling great I suggest find a medical expert that takes an interest in you. Someone that cares and will go all out of their way to help ease your pain and discomfort with the right treatment. I am lucky that I do have doctors that care and that makes my journey a little easier.

Please do not follow my example, it is by no means the right way but I do what works for me.

 

 

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