As Graves Disease awareness month draws to an end, I thought it was time to share my latest update. After a crazy year in 2022 and the end of the year being busier than ever, convinced that the stress and busyness of December may have flared up my grave's disease, I really wasn't ready for an impromptu checkup.
Due to the postal strike, I received my letter four weeks after it had been posted for my endocrinologist appointment, leaving only a few days between Xmas and new year to get my blood taken. I didn't fancy my chances after the festive season and the "slight" overindulgence December always brings, having my birthday and plenty of other celebrations within that month.
In the first week of January, my appointment arrived. I sat at the computer eagerly awaiting my blood results and ready for my Zoom with my Doctor. By the time my consultation finished, I was beaming from ear to ear. I honestly couldn't have asked for better results and taken it one step at a time, It's only January, so I have a whole year ahead of me.
So where am I now?
I am planning to be very near the end of this journey, quite possibly at the end.
I will have my next blood test, which is to be scheduled for March this year, with a follow-up appointment in April for the results. I have everything riding on the fact that I might be able to become drug-free and finally start my body working for itself. We are weaning myself off dose by dose, and I feel "almost better" than ever. Last time it took at least two years for my blood results to become stable. This time it has taken months! I have managed to keep every blood test since last May stable, so I am on a roll!
My skin and hair have improved!
My hair is growing back, my skin is clear and glowy, and my energy levels are better. Yes, I still get the days when I need a good rest after boxing day, I slept for 30 hours, only awake long enough to cook dinner, eat and then straight back to sleep. I missed daylight on the 27th!
I needed my rest. I was exhausted from all the Christmas fun that exceeded the whole of December, but I had a blast. I was starting to enjoy life again and start living and exploring the world. I needed that long sleep to catch up, I did a whole year's worth of living in one month! I really cannot blame "Grave's fatigue" on this one.
Having had a whirlwind year, from knowing that something was wrong while working my weddings in February to very nearly getting the remission vibes less than a year later.
It goes to show what a difference a year makes. I felt horrendous in February last year. I struggled with my breathing and was always short on breath, my heart was beating so fast I couldn't sleep at night, I had no control over my temperature gauge, my body trembled, and drawing eyeliner in a straight line seemed an impossible task. A year on, I am calmer, breathing freely and deeper, and have the steadiest hand a hair or makeup artist could ask for. ( I have more on my symptoms in a previous blog post)
So much has changed, and I have worked so hard for it (read my tips for self care here) . It has been the most temperamental part of my life, it is finally time to get my hormones under control for good.
I really feel that this time I have gained control for the rest of my life. I think the flare-up was all down to covid, the lockdown, and all the stress and unhealthiness that came with it.
I know I went off track thinking that 'lockdown' would last a few weeks, I think we all did! Sangria at lunchtime, why the hell not? After all, we were on a two-week summer holiday! However, it lasted a hell of a lot longer than anyone expected. I was out of work for what felt like forever! Most weddings were called off, my dreams to move home were crushed, and what looked to have the potential to be the busiest year of my life had been literally Cancelled! To say I was stressed was an understatement.
I totally went off track with my eating plan and comforted myself with the wrong food types.
Having learnt what I know now about the disease, I was creating the perfect environment for it to thrive, survive, and help it take over my body, and it had done just that.
So now the past 11 months, since the minute I was aware it was back I have been doing everything I can to control this disease and put it back in remission.
Diagnosis day!
I remember that day like it was yesterday,
I thought it was back for a long time. I was just waiting for the levels to hit the line to say yes, drug therapy can start today to have it confirmed. I was slightly concerned that maybe I was imagining things.
It was a Friday evening. I had gone for a blood test earlier that morning feeling awful my skin, hair, my body, everything hurt. My phone rang. It was my Gp calling to tell me I needed to start my medication tonight.
As I was in the supermarket, I quickly did my shopping, consciously aware of what I should and shouldn't be eating for my disease, and then headed off to pick up my drugs and start my drug therapy that evening.
From that moment my life changed. I knew I had let myself down. I had beat it before, and just a little stress and sadness had ruined all the hard work previously.
I had no one to blame but myself. I wasn't ever going to let myself down again. How could I? From previous health issues I have had to fight to survive, how stupid was I to just let things pass?
Now I am on track with Healthy eating and Movement.
At the first case of my grave's disease, I joined the body coach plan near the end of my journey. I was pretty sure that helped strengthen and cleanse my body and aid my remission last time. I tried to stick to the plan after I finished it and just totally went out the window in lockdown. So after I had gone back to work, I signed up for the body coach app to get me back on track.
I have been trying to do the app as much as possible, If I cannot work out because at times I just can't. I stick to the lower carb meals and go for a walk, I use the principles of low-carb high cards, rest days and workout days.
The plan helped me feed my body correctly.
I looked into foods and vitamins, and what graves disease sufferers lack, and ate or drank my vitamins where I could. My zinc levels were far too low, so I did have to supplement those. I tried to keep to High protein, low carb and very little natural sugar.
It's common sense really, anything bad is going to upset your body! I barely was able to work out through last year's plan, but I am giving it my best shot this year. If I can't lift a weight or do a sit-up one day, I go for a walk. I just make sure no matter what I keep moving.
In May 3 months after diagnosis I was told that my levels were extremely high and that radioactive therapy was the better choice for treatment for me then. There was a very high possibility that I may not be able to carry children, that I could make them very ill and that I had to decide if I wanted a family of my own. Radioactive therapy seemed the only chance. Now a year on, I still have to finish my drug therapy before I can even think of having children. Then I want to give my body time to heal, to work for itself to strengthen and work out what it needs to do.
I cannot say that radioactive therapy isn't in my future, But my Doctor has high hopes that if I stick to my "healthy lifestyle" there is no reason that I cannot try. I will have a test in September that will tell me the speed and rate at which it may come back, and then make the choice from there. But right now with the most positive mind and perseverance, I will do everything I can to avoid that. Having had heart surgery previously with multiple complications, I am 100 % adamant that I don't want to be tampered with again, I have to be aware that this disease causes so much damage to my body. Staying on track is my only option.
I am on the last leg and will do everything I can to stay focussed and keep winning at this. Now to pass this final blood test otherwise it is back to square one! I know that I've got this!
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