Another month passes

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Bit of light reading at the beach last month

I’ve been a bit busy trying to live a life of sorts over the last month. I’m grateful that through all this I’ve been able to work as required, I don’t have a manual labour intensive job thankfully and I work from home. But mentally it’s continued to be a struggle, concentration isn’t easy and I’ve struggled to relax, to unwind and empty my head. I’ve had a few odd headaches recently as well, like migraines in intensity but more of an all over dullness and heavy feeling. I can’t say I’m finding it all easy to deal with, some days I’m focused and positive then a few days later I’m in the pits of doom again. This blog continues to be a place to dump my feelings and what I’m going through so I can look back on this one day when I hope I feel much better.

So I thought I’d do a brief summary of how I’m doing 15 months post Floxing and 8 months post relapse. Firstly I’m not fixed, but I’m better than I was maybe 4 months ago except for a few ongoing and rather difficult symptoms.

So what’s improved?

  • My sleep is better, not great but I get more than I did. I’d say I’m getting maybe 6 hours sleep and fewer wake up moments in the night.
  • I’ve stabilised with the aches and pains, they’re not gone by any means but I know what to expect when I wake up.
  • I’ve not had any electric shock type pains for a while now.
  • I have a life of sorts in that I am able to get out, drive, walk a bit etc.. So I’ve not been entirely stuck at home as I was earlier in the year. I’ve had a few days out, a weekend away camping and some cinema trips but I tend to pay for it afterwards with aches and pains.

What’s not so good?

  • I still cycle good days and bad, sometimes I get a week where I’m feeling things are improving only to get knocked back yet again.
  • My joints are not great, especially in my legs. My knees, ankles and feet continue to burn to some degree 24/7 and my right foot is pretty bad with a lot of discomfort in the joints, sole of foot and pretty much everywhere! I can’t kneel down or crouch, I just couldn’t get up again without help. Twisting my leg side to side causes pain and a worrying tightness.
  • I get repeated episodes of weakness where my muscles pretty much all over just feel weak and heavy. Today is an example where I feel like lifting my arms is actually a tough call.
  • Vision has worsened and some days I struggle to even focus on the TV other days it’s not as bad but it’s definitely worse.
  • I have been getting occasional high pitched tones in my ear since I was a kid, usually lasts a few seconds and fades. I guess it would happen once a months or so. Recently they have been more frequent and the tone has changed to a sudden dullness of hearing that has lasted a minute or longer before fading.
  • Palpitations! I have ad hoc episodes of these but more worrying or should I say distressing, is the size of the “thump”. I’m kind of used to them as I’ve had them for years but they are usually a little flutter and a slight dizzy feeling which I get when tired or stressed. These more recent ones have been much more of a thump and cause some discomfort sometimes as well as the dizziness and shaking. I’m having a 24hr ECG this week as it happens to I’ll see what that shows if anything.
  • Depression and Anxiety are an ongoing problem, fuelled by life challenges, work issues, health issues, getting older! I’ve been in some pretty low places in recent months,  losing the ability to be happy, to be excited, to look forward to things, it’s a sad place to be.
  • My skin continues to look older and dry with more age spots appearing and wrinkles. I get episodes where I seem to get little spots appearing, maybe the body is detoxing or I’m eating too much junk.
  • My teeth are suffering again with numbness and feeling loose.

It’s funny when you start to document what’s going on and you realise that you’ve still got a lot of issues even though you thought you had improved a lot. I guess I have improved but I’ve clearly still got problems that make my life difficult.

I had a day out yesterday after a night of not much sleep. By evening I was exhausted, my joints were on fire, I could hobble but walking was hurting. I had an episode of thumpy palpitations that made me feel pretty unwell and generally I hurt! Today I’m feeling sore, my right foot which continues to be a real problem, is on fire still and hurts to walk on. I’m 46 not 86, I shouldn’t been feeling this bad at my age.

I have an appointment with a consultant next month which I hope might provide some direction although I know there is no cure as such. I’d like to get the joints scanned to look for damage or inflammation really but I’m reluctant to then take medication .

All I know is I want my old life back, I want to be able to ride my motorcycle as I used to, ride my mountain bike, walk all day, jog if I want, join a gym, run up a flight of stairs, get up off the floor without needing help or to hold on to something, run around and play games in the park or on the beach, plan things to do without worrying if I’ll be strong enough to do them…

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