A Summer with Arthur

As the summer holidays are drawing to a close I've taken time to reflect on how the holidays have been and how Arthur has impacted what we do as a family. 

I would like to say that the pest that lives in my body which goes by the name Arthur  (or rheumatoid arthritis psoriatic arthritis oosteoarthritis to be precise ) has not had any impact on family life but I would be lying. 

To be honest, there have been some horrendously painful days, days spent in a fog of fatigue and pain relief, days of subluxing joints, days with nausea, days spent at hospital appointments and days wondering where bruises have come from and why does having fun result in days of pain and rest. 

There have also been some fantastic days spent with family and wonderful friends. The purple chariot has taken me on some fantastic but challenging adventures. The first one was a trip to the London Acquarium. London underground is not fully accessible so careful  planning and consideration needs to be made. Unfortunately our day was not a fun as it should be because of the attitude caused by lack of training and awareness by one member of the aquariums staff. One member of our group is autistic and the aquarium poses various challenges for anyone but more so for our 4 year old friend. To be accosted for sitting down out of the way so he can have a drink and a minute to find his barings before walking through a crowded tunnel was not fun. To be accused of picnicking and the member of staff not to listen is not fun. Not all disabilities are visible. 

While wheeling round the aquarium looking at the fishes and enjoying the day one woman actually stepped over me to get to a tank and someone else physically moved me out of the way.  They pushed my chair! ! I mean what the actual hens teeth is all that about?  Talk about making me feel 1) invisible and 2) a second class citizen. Needless to say I commented rather loudly much to the amusement of my 10 year old. 

There have been some great trips.  One was to the Natural History Museum and the V&A.  The staff were fantastic and made the day easier by explaining where lift access is and inviting us to skip the long queue to enter the museum.  

I also have a wonderful powerchair which has enabled me to go on family walks to the park, into town for a coffee and wheel along the pavement holding my hubby's or my children's hands.  My new independence was made possible by some amazing friends and their fundraising. The ability to be able to go somewhere without the risk of falling or having to go home due to pain is very liberating.  

Most people expect someone with arthritis to be older.  Well I am getting older.  This summer I celebrated my 37th birthday making my time with Arthur at least 25 years.  At the beginning of the holidays myself and my family recorded a short film for Arthritis Research UK as part of their new campaign about how arthritis can be an invisible illness.  We were honoured to be part of the film and hope it raises much needed awareness. You can watch the film  by clicking the link 

https://youtu.be/bWS6cvxF280

This summer has been a mixed bag but one that I hope we have been  able to make good and happy memories with our children