This year has been a strange one for many different reasons. Probably too many to list in this piece, but an emerging theme keeps coming up time and time again… and that is that it is just my husband and I now, and it may be this way for a very long time.

My declining abilities has seen me give up a lot of online groups which I participated in. It has also meant that I am fearful of making plans to meet with friends and acquaintances as I invariably have had to cancel. Friends have gone and living their lives. People forget when you aren’t always in their lives or doing things with them or for them, that’s just the normal and natural way… so now it’s just us.

It’s surprising how small life can get and how quickly people fall away, but I have come to see this as another part of the challenges of chronic life. I refuse to see it as a personal indictment on me. I prefer not to hold on to feelings of loss, sadness, disappointment or abandonment. It doesn’t help me and it doesn’t change what is happening in my life. When seen like this it doesn’t hurt or surprise me anymore.

If my current life is too boring and limited for others than I can look at this very objectively and calmly now. I am more able to resign myself to the realities of life without fear or blame.

I imagine that I could try to remedy some of this by doing online videos and expelling energy that I just don’t have In order to garner some interest and interaction, but I currently believe that true friendships and companions shouldn’t require more than we have to give. So for now I won’t be attempting such things. I use my energy to retain whatever small amount of independence and enjoyment I can.

The message has been clear for some time now that it will be just us for most of my remaining life now and so I am looking for ways to make sure that we approach this period in the healthiest ways possible.

By healthy I mean having healthy expectations and behaviors. It will be necessary for us to strive to be companions and yet still individuals.

Having our own pursuits, interests, me time, privacy and boundaries are important for us both. Often these lines can blur quickly when you share so much of your lives together.

Wearing different hats and being being able to change them regularly i.e. nurse to husband, friend to carer etc is extremely hard sometimes.

Sometimes I need his help to do the smallest of things and sometimes he needs my help. The scales move back and forth. We must allow for this whilst still having healthy boundaries.

The first thing I have had to acknowledge are my limitations. What I can’t do or what I can’t provide. And the same is true for him. For example I can’t give him a males perspective on issues or problems. I can’t be a peer as I am not in his same circumstances.

He can not, and will never, know what it’s truly like for me.

That is probably the strangest part of all. Especially in times when he appears to be having the most relaxed and peaceful experiences and I am riddled with pain and self doubt. To be so close to someone and yet not truly understand has been a difficult hurdle but an important one we still keep facing. The key is communication and honesty.

It’s just him and me…

years ago I couldn’t even imagine a scenario where this would be my reality. I was busy. I was working hard. I was independent. I was a helping and giving person. I was an active and confident woman. It’s remarkable how some things change us so profoundly.

My only hope for us, and anyone else who may be in this position, is that we face this and overcome our challenges in the best and most respectful way possible. If we need counseling than we must seek it. If we need time out than we must take it. If we need compromises than we must be prepared to find them… together.

Gentle hugs,

Trish.