Revealing the invisible illness of a mum who doesn’t like to complain

I guess I always knew something wasn’t quite right. For as long as I could remember, I suffered periods of anxiety and depression, exhaustion, insomnia, migraines, stomach problems, severe body aches and painful joints. There was always a plausible explanation for it – postnatal depression with my first child, the death of my mother, subsequent pregnancies and postnatal depression, a miscarriage, a divorce, a major move, financial troubles, the fallout when my children’s father stopped contact with them, a hectic lifestyle with little support due to moving miles away from my family and friends, a toxic relationship, the stress of working on a degree with a new baby and 2 older children.. the list goes on. Every time I went to the doctors, all of my symptoms were wrapped up in a diagnosis of stress and antidepressants were offered, although they did little to help. I’m not the sort of person who likes to make a fuss, and I have a very strong ‘get-on-with-it’ kind of attitude. I don’t like sympathy, and I don’t like to admit defeat, or even that I’m struggling, so eventually I gave up complaining and accepted my symptoms as a natural part of my life, using exercise to combat the depression and anxiety, and learning to live with the exhaustion and aches and pains.

However, this was clearly not a long term solution and inevitably the symptoms caught up with me. More recently I became forgetful and disorganised, more symptoms which were dismissed as stress, despite the fact I’ve always worked in administration and taken pride in my organisational skills and my ability to retain information, particularly dates and phone numbers. Then, in October 2017 I had just begun my 3rd year at uni, when I caught the flu, which was accompanied by a severe chest infection. By Christmas I had still not fully recovered, and was suffering from swollen glands any time I felt tired, ill or stressed. I was sitting down for 5 minutes and waking up and hour later, and I was barely leaving my house. In January I spoke to the Dr, who advised me to rest and keep an eye on my symptoms. It took until March to convince my Dr to take blood tests, which finally brought a diagnosis of hypothyroidism (underactive thyroid) which was later confirmed as hashimotos hypothyroidism (an autoimmune disease which causes the body to attack the thyroid). An ultrasound scan also discovered a multi-nodular goitre, (a series of swellings on my thyroid) which is painful and sometimes swells to the point that I can’t swallow and requires further investigation, so I have been referred to the ENT.

I have mixed emotions about all of this. Finally, I have a diagnosis which proves that this was NOT all in my head. All of the symptoms I described are common with hashimotos hypothyroidism, including the depression and anxiety. But, this is a lifelong disease, with symptoms that can be managed, but never cured. Medication will be required for the rest of my life. So far, I have not found a dose of medication that works. Each time the dose is increased, I feel much better for a few weeks, I feel happy that I am finally able to regain control of my life, and I start getting back to normal, and then the pills stop working, the symptoms all return, and I feel worse than I did before medication. The idea that I might always feel this way is terrifying.

By far, the hardest part of this has been the impact it has had on my relationships. I don’t like to make a fuss, so I’ve only told a handful of people. Most people don’t understand, and I don’t explain it very well. Whenever I do complain about pain or exhaustion or forgetfulness, they’re very good at pointing out how hectic my lifestyle is and suggesting I might be stressed, which I find a teeny bit patronising. I quite often forget plans that I’ve made, and birthdays and other important things, so I find I let people down more often than I would like. I also forget to reply to texts, or confirm provisional plans. Sometimes I’m just too exhausted and have to cancel last minute. Some people understand, others don’t. Some friends have stopped inviting me out. Some have stopped speaking to me altogether. I often feel very alone.

But this is not about getting sympathy. This is about me doing my best, keeping positive, and giving my children the best life I can. Some days my best will be getting up and getting dressed, other days my best is much, much more. I’ve decided to blog this so that I can keep track of the ups and downs, so that I can look back on the difficult days and remember that they are only temporary.

My thoughts are, that no matter what you are going through, someone else will be feeling the same way. Hopefully others will join me on my journey, and we can support each other along the way.

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