I have recently become a member of the forum and this is my first post, essentially seeking friendship amongst fellow members.
I was diagnosed with general Scleroderma and Raynaud’s in 2008 at the age 44 (I am now 50) and it has since affected my heart and lungs. I am seeing the wonderful specialist team at the Royal Free, London on a regular basis and the treatment they have prescribed has actually improved my heart and lung conditions whereby I am so much better than I was 3 years ago when I was in both heart and lung failure. Having been off work for 18 months I have now been back on a part-time basis for a further 18 months.
I am so relieved to have improved and my lifestyle is far better than I would have expected but I am now left feeling lonely and isolated. I have wonderful support from my family and friends but I am not sure if they understand my day-to-day problems having seen me so ‘ill’.
I am lucky to be able to move about and exercise within the limitations of my lung fibrosis but I feel other people expect me to be able to do more. I find housework exhausting; walking in anything under 10 degrees Celsius is a challenge on the lungs; I am losing my teeth due to the Scleroderma, they would appear to be being ‘pushed out’ of the gums; I am losing control of my bowels and have had many accidents without noticing!
I feel terribly self-indulgent even putting this on paper as I am the type of person to give myself a kick up the bum when things get to me but I am increasingly feeling isolated.
Wishing you all the very best