I have had one on one talks .. away from home.. so I could have their "full" attention.
I needed to talk to my children, now young adults, as this disease hit when they were young.. and I was their only parent.
It hurt my heart that I could not be fully there, as I once was, when they needed me most.. those adolescent/teen years are so stressful, more so in these times. So many ways trends, judgements are pulling at them.
Not having a Dx.. or reason, yet 'knowing' something was not right was in itself stressful.
I adapted for myself and children as best I could.. no more hiking .. but we had a great time making cones from newspaper and then collecting wild raspberries. Joining the lake in summer, even though strangely Mom wasn't jumping in the water that summer. On and on.
Then came the symptoms of waking in the morning and feeling as tired or more so than when I went to sleep. Hip and leg pain, other things. Coming home from work and literally crashing.
Being told by GP .. you are a single Mom with a lot on your plate.. you are depressed.
Hmmm.. I felt mostly impatient to get back to who I used to be for myself and my children.. we used to always be out and about.
I had students born with disabilities, some never walked, some non-verbal, etc. So I mistakenly quantified and dissected my symptoms into oblivion and kept counting my 'blessings'.
Rationalizing, positive thinking is sometimes a distraction.
Before I hit the wall I met DH..taking him to outdoor concerts, here and there.
Suggested he buy a motorcycle (he had one prior). I only got on a few times.. before I 'hit the wall'
And was literally bouncing off hallway walls when I would wake in the morning.
Finally researched. Got to teaching hospital on my own and a DX.. then shocked that I was deemed 'disabled' without jumping through hoops. I cried.. naively told Dr. "thought you were going to cure me. I have things to do..
like getting a PhD." I had a one on one talk with DH and he did honestly confide he 'missed the old me and felt bad for me'. Difficult to hear.. but, our relationship is based on openness. DH has insulin dependent diabetes and heart bypass... so I thought I would be taking care of him in the future.. lol. Now we watch each other. A true match. And both Pieces.
So life is a road.. the journey has twists and turns.
One door closes, another one opens.. up to us if we step through it.
I am blessed that I worked with students born with disabilities.. will never dance, do tricks on a bike as they are in wheel chairs. Not sing outloud, as they are non-verbal, not give a socially acceptable belly laugh or smile without cues as they have autism/Asperger.
Travel: I had wanted to re-visit Europe. Not likely now. Ahh.. there are so very many places here in the states, and within driving distance that I have not ventured into.
Career: Ok.. I am looking at Hospice volunteer work. We also help with our young granddaughter.
Relationships: I do not believe there exists anyone who is 'perfect' and there may be someone wishing/thinking the same as you.
Understanding: I do not believe that when I was healthy I could have really 'understood'.. so I do not expect understanding about an experience that is realistically beyond the realm of healthy persons. And since I do not care for sympathy nor pity.. I tend to keep my symptoms for my doctors.
Energy/Isolation: Hard to do things when not feeling well and not feeling well can set off a downward spiral.
Hard as it is .. it really is important to get out and walk. Over and over I see exercise noted under management for illness. I am looking at the free yoga classes @ library. DH had leg surgery due to diabetes.. so he needs to walk to help circulation, etc.
It really does help help to journal problems and then list some possible solutions, alternatives, adaptations.