It's not all about the PJs!
Ok, so this is the bit where I tell you my story.
I was diagnosed with ME 11 years ago. I was housebound and sofabound for roughly 6 years. In that time I depended on my family for everything - my parents for care and love and my sister for the laughs and keeping me sane. I always believed that I would 'get better' when my body was ready to. Pacing, pain medication or external support never entered my head. It wasn't until I turned 18 and all the support I had because I was young vanished. Things got progressively worse and at 20 I had enough. I believe you have to reach that point before you see the light at the end of the tunnel. So my GP referred me to St. Albans ME/CFS clinic where I got support, pacing advice and celebrations when I had a High5 moment.
I understand suffers in their darkest moments who believe they will never be able to achieve all they want to achieve, or live the life they want because they can't get off the sofa for all the love and money in the world. How when you are that unwell, you can't stand people being positive, people who tell you 'you do get better', people who see all the positive things about what you have achieved in your day because all you see are the negative ones. It's normal - YOU are normal to feel these things!
That’s when you are really unwell, you go through so much more when you are in recovery: the pain of pacing, the heartbreak of trying to find out who you are when living with ME, the shame of not being as unwell as you were when all you want is a high5 for making it through the day! But you don't because you are dreadfully aware that others aren't as well as you and one of the last things they need is you telling them about it.
However, you must celebrate and acknowledge the High5 moments, embrace them and shout them from the rooftops because they are amazing. YOU are flipping amazing for having them!
That’s why I have set this up - to celebrate recovery and shout it from the rooftops in the safe understanding that there are people out there who feel exactly the same as you, want to celebrate and share their High5 moments.
I was diagnosed with ME 11 years ago. I was housebound and sofabound for roughly 6 years. In that time I depended on my family for everything - my parents for care and love and my sister for the laughs and keeping me sane. I always believed that I would 'get better' when my body was ready to. Pacing, pain medication or external support never entered my head. It wasn't until I turned 18 and all the support I had because I was young vanished. Things got progressively worse and at 20 I had enough. I believe you have to reach that point before you see the light at the end of the tunnel. So my GP referred me to St. Albans ME/CFS clinic where I got support, pacing advice and celebrations when I had a High5 moment.
I understand suffers in their darkest moments who believe they will never be able to achieve all they want to achieve, or live the life they want because they can't get off the sofa for all the love and money in the world. How when you are that unwell, you can't stand people being positive, people who tell you 'you do get better', people who see all the positive things about what you have achieved in your day because all you see are the negative ones. It's normal - YOU are normal to feel these things!
That’s when you are really unwell, you go through so much more when you are in recovery: the pain of pacing, the heartbreak of trying to find out who you are when living with ME, the shame of not being as unwell as you were when all you want is a high5 for making it through the day! But you don't because you are dreadfully aware that others aren't as well as you and one of the last things they need is you telling them about it.
However, you must celebrate and acknowledge the High5 moments, embrace them and shout them from the rooftops because they are amazing. YOU are flipping amazing for having them!
That’s why I have set this up - to celebrate recovery and shout it from the rooftops in the safe understanding that there are people out there who feel exactly the same as you, want to celebrate and share their High5 moments.