Is it me or is living with MS really hard?
Usually I shrug off negativity as it’s not helpful and I’m naturally a positive person, but just lately I’m struggling to cope.
It feels as if all my reserves of energy and resilience have depleted and I don’t have the emotional strength to fight on anymore. It feels like I’m on the edge of an emotional tightrope, with one side being strength and courage and the other side despair!
It doesn’t take much to nudge me over the edge at the moment and being unable to get involved with my son’s rugby club like all the other mums is the latest straw that’s threatening to break the camel’s back!
The sense of isolation doesn’t help. I’m physically isolated due to being unable to easily pop in and see people, and meeting friends in bars and restaurants is exhausting due to general inaccessibility. I’m dependant on people all the time and can’t do anything spontaneously. People have stopped inviting me to things and only my dear friends keep in touch and make the effort to see me.
I’m also emotionally isolated as people don’t understand and sometimes react with irritation and annoyance when I try to express how I feel.
I’m so grateful, therefore, to the online MS community who get it immediately. What did MSers do before they could rant on twitter?
What can I do to get my mojo back?
I’m sure I’ll bounce back and feel positive again as the alternative terrifies me. I have to remain strong for my children who can do without a mum on the edge of misery all the time with her bottom lip quivering! They’re used to me smiling despite everything being so hard and I’m proud that I usually demonstrate resilience and strength.
My son took it all in his stride when I couldn’t watch him play at the weekend and pointed out all the ways I support him. This only goes a small way to making me feel like a “good enough” mother though and the guilt is omnipresent!
I’ve been strong and resilient for 12 years since my diagnosis but sometimes MS is overwhelming, and I feel like wallowing in self-pity. Is this ok or should we all put on a brave face for the sake of those around us? I’d love to hear your views ……………
budding communications 
I’m not sure but my gut tells me it’s ok to wallow a bit now and then. Thursday last week was like that for me. I hate the thought of being a “burden” to my husband. My 4 kids are almost all adults, (youngest is 17 in 12th grade) so what they need now is my emotional strength but what about grandkids. Will I get to their games? Sigh!! I felt every word you wrote. On Thursday my 17 year old sensed my despair and said, “ Mom be like Dory, just keep swimming.” So that’s my advice to you too 😉
Love that advice! Thanks
All makes complete sense and however positive you are you wouldn’t be human if you didn’t feel as you do on occasions. Short, dark winter days when it’s harder to get out really don’t help. How about setting yourself some daily realistic goals – doesn’t matter how small. I find that if I set myself a goal and achieve it I feel a great deal better.
Great advice! Thanks
Thank you for this. Today I gave in to my bed and sleep after 2 days of feeling totally drained. Normally I try to carry on no matter what but deep down I feel exactly as you do. I feel like I’m hanging to something I’m not entirely sure is worth the effort. But when I see my beautiful grandchildren I know that it is. I think it’s ok to take a day sometimes
I agree. We have to carry on for the lovely people in our lives. Thanks
I found the fatigue management course the MS Society runs very helpful
Yeah, I’ve done one locally which was good