Breakfast at Parliament

Today started at 6am for me when the alarm went off for me to get ready to attend a meeting at the houses of parliament about multi-morbidities and mental health. Putting it simply it was about how long term health conditions affect mental health and how research and support can be improved.

For me mornings are difficult, just getting out of bed is a struggle with stiff and painful joints but I felt it was important for me to attend today and share my story and experience.  Living with long term health conditions definitely affects our mental health but there is little support available or sufferers are not told of any help available.

The event was well attended despite it being early and with other events happening at the same time . I met some amazing and inspirational people including a couple who spoke about their experiences of how Parkinsons Disease and the medication had affected their mental health and the mental health of everyone in their family. You see its a vicious circle. Living with a long term and painful condition like Rheumatoid Arthritis, Fibromyalgia, Ehlers-Danlos Syndrome (the list is endless) affects how we feel mentally. Many sufferers battle depression and severe mood swings. Medication can cause depression too. We're frustrated and angry and upset and this also has an inpact on those closest to us, our loved ones, partners and children.

When you're diagnosed with a long term condition you see a specialist or a group of specialist's but at no point are you asked how you feel, or are coping, or how the diagnosis affects those around you.  My gorgeous now 9 year old son lives with chronic pain.  He has had some really difficult times where he's trying to understand what's happening to him, the frustrations and anger. His mood is up and down. One minute he's my happy smiley boy and the next he's teary or frustrated and snappy. I've explained to our gp, his paediatrician and physiotherapist but no one has offered help or pointed us in the right direction to get help. The school referred him to a home school support worker and he had 5 or 6 sessions with her but that was it. There was no coping mechanisms or support for parents to support our child.

My experience is similar to my son's. I get frustrated and feel 'down' about my situation, my condition and the fact it's a life long condition. I'm not going to get better, I've got to learn to manage it and I will continually learn to cope. I know my condition  and my moods affect those closest to me. When I'm in so much pain I can't get out of bed, when I'm wrapped up in a blanket and crying, when I snap at my loved ones for not understanding, when medications cause mood swings from highs where the Meds are helping to the deep lows when you're weaned of steroids or certain pain relief because it's not good to be on them long term. I feel it's important that when a person is diagnosed with a long term condition that support is available for those people in respect of their mental health and coping mechanisms.

I do try to practice mindfulness and meditation.  With all my children  we tell day stories about our day before bed time but we make a point of saying the positives and there has to be  at least 3 positive things. It doesn't matter how small these things are as long as they are positive. Some days my positive is that I got dressed in the morning or I managed to brush my hair. They're still positives and still achievements.  Today my achievements are massive
1) I went to the houses of parliament
2) I spoke about my experiences to hopefully make a difference for other people
3) I snuggled on the sofa with my 3 amazing children and hubby.

I'd like to thank Arthritis Research UK for the opportunity to attend this mornings breakfast meeting. Being involved and trying to make a difference raising awareness helps me. I feel useful where arthritis and pain has taken so much away from me.

Let me know your 3 positives