As well as living with Hypermobility Syndrome, Chronic Fatigue Syndrome and Fibromyalgia I also live with depression, social anxiety, generalised anxiety disorder and condochritis. I may also have rheumatoid arthritis but as my rheumatoid factor marker isn’t quite high enough I am currently unable to get an official diagnosis for that.
To those of you who know me, it may surprise you to know that I suffer from anxiety. I think it all started when a doctor told me that I was making my symptoms up for attention and I needed psychiatric help – which obviously wasn’t, and isn’t, the case at all. I was terrified about going to the doctors for anything after that. It completely shattered me. I became very quiet and withdrawn around the people I trusted the most and felt completely alone. It took me a long time to feel confident again and to wrap my head around the fact that only one person didn’t believe me – my parents and close friends who saw me struggle day in day out had never stopped believing in me. Ever since that day my fear of social interaction of pretty much any kind has taken me hostage. It’s quite ridiculous but it is what it is. If I go in town during my lunch break I avoid making eye contact with other people and will cross the road if there are ‘too many’ people walking towards me. If there are a few people walking behind me then I’ll let them pass me before I carry on. If I’m asked to do a presentation at work in front of people then I’ll go to the toilet at least twice a day every day to cry and hyperventilate about my impending doom. If I’m invited to a wedding then I’ll immediately think ‘why do they want me there? No-one would notice if I didn’t turn up’. I’ll worry about spilling food down my clothes in front of other people so I’ll choose anything that isn’t soup and will keep drinking to a minimum so I don’t have to leave the table to go to the toilet; chances are I’ll trip over the seat or walk into someone or make a really undignified exit and have everyone staring at me. The list goes on, and on. I have all sorts of scenarios in my head months before an event I’ve been invited to and they all pretty much end the same way – making an absolute fool of myself and looking ridiculous for thinking that people actually like me and are happy to see me. The most common thing I’m told is ‘Oh but it’s ok, so and so will be there’. Yes, they will but they’ll want to go and have fun and not be babysitting the scared person at the side-lines all night. And what happens if other people talk to me, in front of them? What if I say something that isn’t funny or get my words jumbled up and make a fool of myself, and the person I’m with? Everything would be ruined and the person I’m with would wish they had never come with me. See how ridiculous it all is? But I really can’t help it. God knows I’ve tried shaking myself out of it but it’s always there. If I had it my way then social events simply wouldn’t exist and I could stay at home with my dog.
I was first diagnosed with depression in 2009, shortly after I was diagnosed with Chronic Fatigue Syndrome. At the time I was suffering to the extent where I needed medical help so I was popped on the good old anti-depressants. Like most anti-depressants they made me feel worse and after a few months when my mood was getting progressively worse the decision was made to take me off them and see how I go. I had regular check ins with my doctor and gradually my mood got better. It’s not unusual for someone who is living with invisible illnesses to suffer from depression and it’s not something to be ashamed of. The frequent doctor visits, hospital trips, being misdiagnosed, being told there’s nothing wrong with you – it’s not hard to see why you lose any motivation you have. I have so many good days now that I’m so grateful for, but I do have my bad days too when everything comes crashing down. Sometimes there’s no obvious reason for it, which makes me feel worse because it’s like – why am I feeling this way? I had a good day today! Most of the time it’s because the enormity of the challenges I’m facing hit me full force. When will I find the right medication for me? The guilt I feel for my loved ones having to help me. The uncertainty of what tomorrow will bring, let alone the future. Not being able to do the things I used to before I got sick. Not being able to visit my friends and have a fun day out. The list goes on. I’m getting better at telling myself that this isn’t my fault but there are days where it all becomes too much and I feel angry and frustrated at my new way of living. But then I think of the love and support that I’m surrounded by and for that I’ll always be grateful.
I was very recently diagnosed with Costochondritis (about 8 hours ago to be precise). Costochondritis is where the cartilage that joins your ribs to your breastbone is inflamed and it feels like you’re having a heart attack. I’ve been experiencing this pain on off since I was 8 years old but it was only when I was 25 that I felt I could tell anyone about it. I was sent to hospital for tests and scans and thankfully they all came back clear so there was nothing dodgy going on with my heart. I struggled to find the right words to describe the pain but whilst I was doing more research on Fibromyalgia I discovered this condition and suddenly it was clear as day – this is the pain! My doctor agreed and we’re now trialling a new kind of medication to get the inflammation under control. Costo is usually a one off thing but because it’s become a recurring condition for me I need medication that will keep the pain at bay and not interfere with any other medication I may be taking.
spoonielolz 