Living with an illness means different things to different people. It is all encompassing, personal and anxiety provoking. I’ve been told by an MS patient that living with MS is learning to do the things you can, and also the things you can’t. Could this just be acceptance, or simply what’s comfortable, like the old times?
In this publication, a small group of MS patients living at home and are in a wheelchair were asked to share their experiences.
The findings from the interviews were then grouped into three sub-headings:
To be free and independent
“When you lose functions, you become a little insecure and lose confidence. It was necessary to have a dialogue with my wife, and you actually discover that physiological limitations mean that you find other ways of doing things, and practical cooperation. So there are good solutions to that relationship with yourself, is the cornerstone for you to change the relationship with others.”
Threat to the self and one’s own identity
“If some bosses manage to see some productivity in people with disabilities, then I think things could have changed for the better. I have an impression of facilitating in a workplace that they would rather not have. I’m happy to be asked to do something, even though in quotation marks it’s more work than just sitting here, but that someone needs me and that I can do something.”
Adaptation to MS
“Of course a hope. I have a hope, of course I have. Do not give up hoping that your arm will get better. For me, it is with hope that is what I have when I get so bad.“
They authors conclude that it’s important to maintain everyday life and experience, being a resource for the family. They maintain that it is also important to have hope and adapt.
I wonder how many of those with MS actually know how to do this or receive the necessary help.
Nurs Open. 2021 May 30. doi: 10.1002/nop2.956. Online ahead of print.
Experiences of quality of life in people with Multiple Sclerosis who are in a wheelchair
Aim: The study includes health-related quality of life for people in Norway with multiple sclerosis who live at home and are in a wheelchair (N = 6). The purpose is to show how they experience living with a chronic disease such as MS and how they perceive their own situation. How they value their own health and what leads to positive consequences is central to this study.
Design: The study has a qualitative design to show what health-related experiences they had while living with MS.
Method: The interviews were conducted in their home and later transcribed. An interview guide with open-ended questions was used. The transcribed material was analysed with a thematic analysis.
Results: Key themes were being free and independent, threat to the self and one’s identity, and adaptation to MS. Free and independent in everyday life was essential for all the informants. Being dependent on others for basic needs was something they sought to avoid. Adapting to the new situation of changing roles was a challenge that required a lot of them.