So moving: “She” explains life with MS

Please note: The current Coronavirus COVID-19 pandemic is fast moving, and reactions to it seem to update not just day-by-day but minute-by-minute. Obviously, this site was not designed to bring you the very latest developments in a ‘breaking news’ story such as this. Instead, this site will continue to include news and opinions relating to major events, policy changes, and so on.

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I just had to bring you this beautiful piece of writing, which I do with full permission of the author. To me, the words were both poignant and moving, possibly because she and I both have PPMS, but they could be for anyone with a disease that causes similar problems.

People who were, or are complaining about being restricted to their homes during the coronavirus COVID-19 lockdown should realise they have only had a short experience of what those of us with MS, and some other diseases, have to live with day-in, day-out. That’s our reality.

group coverCalifornia /  USA / INT’L Multiple Sclerosis Support Group

 

Pamela Neckameyer, who is chief admin of the California/USA/INT’L Multiple Sclerosis Support Group on Facebook, is the author. She posted it in the group.

She

“She” tries really hard to accept her multiple sclerosis disability and not complain, and she does her very best to not bring other people down by her situation.

She lives as normally as she can, joins in with her friends and family by participating in celebrations, outings and events, and when necessary she is supportive to all that are sick or going through a crisis.

But, she is not like others, she can’t dress and shower without help, can’t drive anymore, or shop, cook, go walking, and do so many things that she used to do on her own without help. 

Being like this, so dependent can play with one’s psyche, but she endeavours to stay strong, going to physical therapy, and she does what her doctors advise.

Intellectually she knows that there are many more serious illnesses than PPMS and is blessed that it is not life threatening, but it can be frustrating and on some days more than others!

She used to run a business, entertain, travel on her own, and do so many everyday activities that she took for granted!

Forgive her if you think she’s complaining she’s NOT, she’s just explaining, she doesn’t feel sorry for herself and doesn’t want you to feel sorry for her … but sometimes one has to explain what it is like to have a chronic illness like MS, one of many autoimmune diseases!

The “she” is me! 🧡

Well received

Wow, powerful stuff ….. and true!

pamela neckameyer

Pamela Neckameyer.

You won’t be surprised to learn that the post was very well received in the group, with Pamela winning many plaudits from members.

Besides both having PPMS, some aspects of the lives of Pam and I are strangely alike. She, like me, was born in the UK, we are both married to Americans, and we both live abroad from our native land. She and her husband made their home in California, USA, while my wife and I live in Andalucía, Spain.

Incidentally, I am a member of many Facebook groups, some related to MS and some not. Without casting aspersions on any others, Pamela’s group is one of the friendliest that I have come across with the admin team prepared to take swift action, if and when needed, to maintain its pleasant family tone.

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Spelling

Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre                              not center (except in names, Centers of Disease Control)                  Colour                              not color                                                                                                                      Diarrhoea                       not diarrhea                                                                                                  Haematology                not hematology                                                                                Haematopoietic          not hematopoietic

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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

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