It strikes me as odd that I have never written about those friends that have visited me by my bedside and given me the greatest gift in all this years of being autoimmune; Their time.
It seems strange that I have never mentioned this before when it is, without a doubt, the thing I am most grateful for, despite the fact that I feel at my most vulnerable and awkward.
When I recall all the times in my youth that I would travel to friends or to locations to meet up with them or drive them to places for catch ups and to enjoy some time together, I never envisioned a time that I would need them to make such the journey to me.
Many friends and family will not do such a thing for fellow Autoimmunes and it can become very hard to stay in touch and so connections and relationships are lost over the course of an Autoimmunes life. It is a sad reality that I find myself having accepted quite some time ago.
Today I rarely have people come to my house for social reasons. Most of the year can disappear without speaking to or interacting socially, but I am not writing this in a self-pitying way, but rather in an honest way, and with the intention of highlighting how truly appreciative I am for those who have decided to forgo the customary social norms and spend time together.
Friendships and connections take on a vastly different meaning to those of us who have health challenges and are immune compromised. There are real challenges in going anywhere and being able to do things that most people take for granted. Like socialising.
Generally speaking, the challenge of going out and visiting with people is almost out of reach most days with pain and disability being such real daily factors for me. It can be heartbreaking for those of us who must battle just to dress and even talk.
I, personally, don’t enjoy people seeing me in this vulnerable way and I know that many people won’t ever know the things I am battling internally when they see me. I have had to accept that and take it all onboard. But it’s far from easy. In fact it can be so isolating and heartbreaking.
However, I have been truly surprised and amazed by those friends who have opened their hearts and minds and even travelled great distances to visit with me, sit beside me and even interact with me at my bedside. Even now as I recall those special people who have done so I am truly amazed.
I can’t imagine what must be going through their mind as they sit beside me and recall all the things we may have done together in the past, the times we have spent together, and the fun things we have done, only to see me now sat up in bed and clearly limited by my health and circumstances.
During these times I will do my absolute best to push away the awkwardness I feel, the sadness and pain I may be going through emotionally and the limitations that I must work with so that I can enjoy the opportunity to connect with them in a real way. I try to “seize the day” and the opportunity to laugh and show them how grateful I am for their efforts.
Those that have made the mental and emotionally journey to meet with me have all been such genuine, authentic, resilient souls that I now have a deeper and stronger respect for. Perhaps I didn’t recognise the true depth of their character back then and the chance to see this has been truly amazing. Often I have been lost for words as I try to describe my feelings about them. Even now.
From a childhood friend, an ex colleague, a neighbour and even a one time lover, they have all surprised me by their capacity to open their hearts to me and take on this new reality in order to spend some time together.
Rarely do I want to mention my health or my limitations during these meetings, I am grateful when they don’t want to discuss these things either. Mostly because I spend every other moment of my life being made aware of my challenges that a “time out” is a welcome and much needed relief. In fact I rarely discuss any aspects of my reality to anyone outside the medical profession. I prefer it that way.
My bedroom has become a meeting place, however, I don’t really enjoy sharing it with visitors because it is also the place where many unseen battles rage and many dark moments are spent. It is amusing to me, in a strange way, that this intimate part of my home must also act as a social space now. My bedroom is now a place that is more used than my living room or any other part of my home.
Bedside visits have become a social setting for me now. the backdrop of my new reality, and one aspect of my life I must simply have to accept if I am going to have a social life at all. I am grateful and humble beyond words to those that have had to lean into this new reality with me and have done so FOR me. To have me in their lives and to share some precious time together.
To those who are reading this and realising I am writing this for you I want you to know how much your visits have mean to me and how often I have relived them in my mind and heart. I hope that you know how truly precious they have been to me and how much they stand out in my mind as I fight the hardest battles and the darkest emotions day to day. From the bottom of my heart I thank you.