Tuesday 27 December 2016

Spinning Plates

I was trying to think of a half-decent title for this blog post, and "Spinning Plates" was all that really came to mind. I needed a title that described how I felt when it came to dealing with physical health problems, as well as mental health problems. I've mentioned my diagnoses before, but I'll state them here and hopefully I can explain how managing these conditions feels a lot like "spinning plates".

Fibromyalgia: I've had this since 2010 and sometimes I feel I've accepted it, sometimes I get extremely frustrated, upset, and angry at how much it limits what I can do/how often I can do it. I'm so used to pushing myself that I find it very hard to stop and pace before I cause my symptoms to flare up. Sometimes I deliberately go too far, because I find physical pain a little easier to cope with than mental pain. When I do pace, the internalised ableism kicks in, and I feel as if I'm being lazy, not making the most of the day etc. I know that pacing myself is a good thing to do, and resting is still productive as it means I am looking after myself. I just wish I could feel less guilty about it!

Hypermobility Syndrome: I'm not entirely sure when it became Joint Hypermobility Syndrome, but I know I've been hypermobile all my life. As I learn more about it, I realise how mindful I have to be when it comes to using my joints. I have multiple subluxations every day, and sometimes I have dislocations too. Having doctors finally believe me (after a physio actually seeing and hearing a joint dislocate!) has helped a little, but doesn't take away the frustration with working around limitations and not getting much support for it.

Depression: Looking after yourself is so so important anyway, let alone when you are dealing with multiple illnesses & disabilities! I really do try, but Depression zaps my energy (what's left of it, thanks to Fibro and JHS anyway!). I struggle with motivation as well. Emotionally, the most basic sounding tasks can feel like trying to climb a mountain. On my bad depression days, I barely do a thing, and then I hate myself for being "lazy". If it isn't too bad on particular days, but my physical health problems are, I then get frustrated with myself for physically not being able to do things that might help my mood a little (e.g. making a nice snack, doing some cross stitch, meeting a friend).

Generalized Anxiety Disorder: When anxiety gets severe, it can limit you so much. I could be having a day with slightly less physical pain, or even less fatigue. On this day, I may want to make the most of this by maybe having a walk, or at least getting out of the house (even if just into the garden). Anxiety can have a real hold on me however, and often it becomes a panic attack (which then makes the physical pain, fatigue etc worse!). As much as I want to be able to do stuff, I just can't. It's as if invisible arms are squeezing me tightly, the room has become unbearably hot, my head is pounding, the room is spinning, and I can't focus on anything else. I know these things are down to anxiety and panic, and that they will lessen in time, but it does not stop me from feeling them so intensely.

Agoraphobia: The symptoms I get with Agoraphobia are very much the same as with GAD, but they are of course more about situations (such as being out of the house, being in a busy place, not being able to get out of somewhere quickly or easily). If it is quiet, having a short walk can help lessen my depressive symptoms temporarily. I want to be able to do this as much as my health allows, but the agoraphobia holds me back. Even if I manage to force myself outside, if it is bad enough, I will not feel better. I will spend the whole time on the edge of a panic attack and that will be my energy gone for the day.

Obsessive Compulsive Disorder: This can affect my ability to get out of the house and cope with daily things. The meds I'm on do help calm down my OCD related anxiety a little, but on a bad day I could struggle just as much as I did before I was on the meds. Again, this holds me back and stops me from being able to make the most of low pain/fatigue days.

I hope this makes sense. There's a lot of similarities with each condition, and of course I know that mental health and physical health often overlap. For me, it feels as if they clash too! I'm trying to manage my struggles with things like anxiety with going outside and guilt from not going outside, when it occurs on a day my physical symptoms aren't too bad. On the less anxious days, I want to do more to help myself, but physical symptoms limit how much I can help myself on bad physical health days!

I guess it's about moderation and, yes, Pacing. If anyone has any tips on getting that balance right, or even if you don't and you need to vent to someone who understands, leave a comment below!

Thank you for reading.

Friday 2 December 2016

Penultimate Physiotherapy Appointment???

I did mean to write this post last Friday, but I've been struggling a lot with severe fatigue. I've not been able to get much done at all, because I've been falling asleep in the day time, and it has been very difficult to rouse me and keep me awake. I did see the GP about this recently and had some blood tests (only for B12, Folates, and Full Blood Count though?). My B12 came back low again, but the GP wants to see if I can increase it by altering my diet. If in three months it's still low, I'll be prescribed B12 tablets. I'm not completely happy with this, as my Vitamin D tends to frequently be low, and TSH tends to be high, (and neither were tested) but I guess I can wait three months and ask for more tests if I'm still having severe fatigue.

Ok, onto my physio appointment! Please read my recent post Bendy Life if you want to catch up.

My second appointment was a surprisingly quick one! The physiotherapist asked how I'd been getting on with my exercises and if I'd bought/been using the insole arch supports. I said that I'd been coping well with the exercises (with not too much pain during) but hadn't found any real improvement with my dislocating left knee. She decided to make one of the exercises slightly harder, in the hopes that it will do more to strengthen my muscles. It did hurt a bit more, when I tried it out, but not an unreasonable amount *insert cheesy joke about No Pain, No Gain here*

She also tried me with Kinesiology tape. At first, she wanted to use more conventional tape (I'm not sure of the proper name for this) but I told her about how easily my skin rips and bruises with tape such as micropore. She said the conventional tape definitely wouldn't suit me then! The Kinesiology tape suited me very well, and I've ordered some to use at home or on extra bendy days.  She showed me how to apply the tape around and under my kneecap. I found it really helped support my knee, and it didn't constantly feel as if it would dislocate. Believe me, this felt like such a relief! Having to think about every step you make, in order to avoid subluxations/dislocations, is not fun!

The session pretty much ended after this! I was very surprised, as the last one was so much longer. The physiotherapist also asked if I wanted another appointment. It seemed that she wanted this to be the last session; which I found really surprising! If I remember correctly, at my Orthopaedic assessment, it was recommended that I have physiotherapy long term. I did ask for another appointment after Christmas; to give me time to see if there's any improvement. I think this might be my last appointment though! I was too taken aback to really say anything about that, but I went home very confused. I'd have understood if I had noticed a lot of improvement, but hardly a thing had changed since my last appointment!

Have you had a very short programme of physiotherapy, when you were under the impression you'd be having a long term one? Is there any reason why? Please comment below.


      1. https://amysmysteryillness.blogspot.co.uk/2016/11/flare-ups-frustration-and-fear.html