The Many Variations of You

It’s been a while since I’ve posted anything – I think the reason for this is that there has been quite a lot going on since my last post. I’ve always been more of a retrospective writer as I find it hard to get my thoughts coherent and in writing when I’m in the midst of things, but I’ll try and work at that and be more consistent.

So what’s been happening? Well as you may be aware I was trialling the AIP diet for around six weeks over October/November time. Full disclosure; I had some slip-ups here and there with food, but nothing major. Over the course of that time I lost a stone in weight… this was never a goal of mine, but the weight loss could be due to a combination of reasons – the new meds, losing muscle mass from decreased exercise, and the AIP diet itself. Although I don’t feel that AIP is a miracle cure it certainly has proven to have some benefits – before starting my new eating regime I was experiencing bouts of what I describe as deep stomach aches and stomach cramps, one attack was so severe that I was writhing around on the bathroom floor and vomiting for half an hour before it subsided. I’d say the deep stomach aches lasted maybe another three weeks on and off once I started AIP but since then I haven’t experienced any, even over the Christmas period where I was allowing my self to indulge a lot more in food. Now, this is quite a big thing for me because I do struggle with my digestion and the fact that I was indulging over Christmas and, other than some bloating, I had no other major issues, inclines me to believe that AIP has done me some good. Did some healing start in my stomach while I was on it? I certainly wasn’t getting bloated and uncomfortable like normal so I’d like to think so. There were some negatives, other than the initial hunger, I did notice that my skin was a lot more spotty and oily to begin with, but changes in your diet can affect the skin and, as it only lasted a couple of weeks, I felt that it was a small price to pay in the grand scheme of things.

Unfortunately it wasn’t all positives over this time; I mentioned in my last blog that I was signed off from work for two weeks towards the end of November due to severe fatigue, vomiting, lightheadedness and new issues with my legs, meaning that I needed my pain medication increased. My GP felt these symptoms were a combination of issues; the vomiting and lightheadedness was likely caused by starting the Hydroxichloroquine, the intense aching in my legs was likely due to my low iron levels, however the pain I was experiencing in them and the increased pain in my hands was most likely to due a flare up of the autoimmune condition. So there was a lot to process. Not least the fact that this was the first time I had had to take time off directly because of my condition. Since then I have developed more stiffness and pain in my hips which is completely new. I recall a friend saying to me a while ago it’s good that you can still physically exercise because sometimes that’s just not an option. I entirely admit that I couldn’t grasp the concept that at some stage, for a period of time, I would struggle even to do gentle exercise. Don’t get me wrong, I’ve had periods of weeks where I’ve been ill and not able to do much, but I can always manage something gentle. Well I discovered that this wasn’t always going to be the case, there has been a period of around three months where I haven’t done any real exercise because my body physically would not allow me to do so. During this time I also started to come up in new rashes. Initially they began on my feet and chest, would disappear for a while then reappear in a slightly different place before covering most of my arm. The rashes themselves weren’t itchy but during this period I had the most intense itchy legs which would flare up mostly when I was trying to sleep. Of more concern to me though has been the issues I’ve encountered with my memory and concentration; I keep tripping over my words and forgetting what I am talking about mid way through, or just simply saying something completely nonsensical. Having read other blogs and through doing some internet research I know that “brain fog” is a known symptom of certain autoimmune conditions, so this appeases me slightly. Someone commented on one of my previous entries that when you encounter these symptoms you go through a process similar to grief, in that you grieve for the person that you used to be. I totally understand that this may sound dramatic to some of you reading this, but it absolutely resonated with me. I’ve always been fascinated with the concept of identity and the self and what this actually means, and at times, when I’ve been at my lowest I absolutely question who I am, when did I become this person? why can’t I get myself out of this feeling of uselessness? The biggest question for me that has arisen is if I wasn’t around any longer have I made a difference? I know as I write these down that they’re irrational thoughts but in the interest of being as open and honest as I can, I feel that they’re worth sharing and that once you come out of that dark place, and you will come through it, things become clearer and for me I begin to rationalise what has passed. The truth is as people we are constantly changing and evolving. I personally believe that there is no individual self but many selves and identities depending on where we are in our lives. 34 year old me is not the same as 20 year old me, so why should I expect 33 year old me to be the same as 32 year old me?

I don’t mean to make my life sound all doom and gloom because I’m very lucky to be able to say it isn’t at all, this stuff is just a small part of my life. True, unfortunately at times it has a large undesirable impact, but it’s just a small bend in a path I’m very grateful to be on. My next appointment at Guy’s is at the beginning of February and, although I have the normal anxiety, I’m really hoping we are on the path to finding some more answers. Right now I’m in a good place – I’ve started running, (well, I say running – plodding and walking is a more accurate description), and I’ve started doing yoga and strength work at home again, so hopefully the medication is beginning to have a positive affect. After taking some time off I’m back on a variation of the AIP diet but rather than cut out alcohol completely this time I’m just looking at limiting the amount I drink. In terms of food on a day to day basis I’ll be strict, but should we go out to eat or over friends then I’ll look at loosening it a bit. What I’ve learnt throughout this process so far is not to let it consume you, I need to be careful not to become obsessed with eating within very restrictive guidelines and cutting out things completely. Some discipline is great, but I think for me it’s more important to find the right balance and ensure I’m helping myself both physically and mentally. Right now I’m working on keeping myself motivated to get out and run when I get in from work rather than taking a nap. In my next blog I’ll be discussing where I am with my fitness levels and how I plan to progress.