Chronically In Limbo

  There are a lot of reasons why it may be easier to open up on the internet about health struggles than it is in real life with family and friends. And it isn't necessarily down to a lack of supportive family, or not having any friends who are sensitive to the situation. You can have the largest family support network, and an understanding circle of friends and still hold back from sharing as much of your truth to them as you do online to relative strangers. Why? For me personally, it's for three main reasons. 1. Guilt Guilt that knowing how much pain I'm truly in, or how much I'm struggling will cause THEM worry and pain.  Guilt about how that knowledge will affect them, and how bad it may make them feel that they can't help me or make things better. Guilt that trying to lessen my burden by ranting about the unfairness and struggles of my life, is adding to their burden. 2. Fear Fear that my friends won't understand my  chronic illness  struggles. Fear that th...

  I find taking a pause can be beneficial in many different situations. ~ When there seems to be so much to do that I don’t know where to start and overwhelm and panic kick in ~ When I’m down in the black pit of depression and can’t see a way out ~ When I’m in the middle of a flare and it feels like it’s going to last forever ~ When the world seems too loud and every noise feels like a hammer hitting me ~ When the kids are pushing me to the edge ~ When the pain is so bad and I don’t know if I can cope with it anymore I might still be in the same situation afterwards, but taking that pause really helps to refocus my mind and gives me chance to remember that ~ I can just take it one thing at a time and it will all get done eventually ~ That I’ve been down in that pit before and so I know that there is a way out ~ That I’ve got through every other flare and I will get through this one and get back to baseline ~ That it’s ok to retreat from the world and it’s noise until I’m ready...

 TW: Suicidal Thoughts I had a moment yesterday. I had a couple of better days. I went in town with my family and did some shopping on Friday. And yesterday I spent the morning actually sat on the sofa downstairs with my husband and children. And then the payback kicked in. The pain flared, and I ended up back upstairs, on the bed, on my own again.  I took my painkillers, and then I lay there waiting for some relief that never seemed to come.  I just lay, in agony, thinking how unfair it was that a day and a half of some version of a normal life could still leave me like this. I lay there just wanting the pain to stop.  And the thought crossed my mind that there was a way to make it stop.  And for a brief moment, that thought seemed very attractive. An end to the pain, and the grief of what my life looked like now. And then I remembered that that was a permanent solution to a temporary problem. I remembered that I am in control of my life even when it feels like...

  Do you ever find yourself scrolling through posts and stories, and feeling less than enough? Looking at glimpses of other peoples lives, and feeling that yours is lacking? Reading stories of other peoples successes and feeling inadequate instead of inspired? Some days I can scroll happily, taking note of things of interest to me without being affected negatively. But other days as I scroll I am struck anew by the injustice of having my life circumscribed by my illnesses. Having my potential limited by lack of energy. I see what other people my age and younger are accomplishing. The books written, the businesses started, the projects completed.  What other mothers are doing with their children. The activities set up, the games played, the meals cooked.  And I start to hear that little voice in my head telling me that I’m not enough. That my lack of accomplishments isn’t because of my illness but because I’m lazy, or stupid, or just not good enough. And I suppose the sens...

Have you ever hated your body because it has a chronic illness?  Have you ever blamed it for not being able to do what you want it to do?  I used to spend so much time and energy fixating on what my body used to be able to do.   First, what it could do before I got ill. And then as time went on and memories of my old, healthy body started to fade (I’ve been battling chronic illness for 19 years now) instead I would fixate on my better days, my baseline. Every time I had a flare or an exacerbation of my symptoms, I wasn’t focusing on what I could do moving forward, trying to better understand, use and cherish my current body. Instead I would waste energy looking backwards and focusing on what my old body, a body that I might never have again, could do. And because of that I could never find contentment. I could never be at peace with what I was doing day to day, because I was always looking to do more, to be more than was physically possible for me.  So now I try my h...