Introduce yourself. What illnesses do you have? How long have you had them?
Well okay then, technically I introduced myself in the last post so let’s get straight to my lovely *sarcasam alert* collection of chronic illnesses so here is all of them (I think) and how long I have had them:
- Asthma (was mild now moderate to severe) – 26 years.
- Allergies (progressive) – 24 years.
- Myalgic Encephalopathy – 16 years (since onset) 11 years (since official diagnosis).
- Fibromyalgia – 10 years.
- Anxiety – literally as long as I can remember.
- Generalised Anxiety Disorder (GAD) – 7 years.
- Depression (situational) – 16 years (in and off).
- Periformis Syndrome (PS) – 4 years.
- Spine problems (no offical diagnosis or name as yet, caused by being long term bed/wheelchair bound) – 2 years.
They all affect me I would say, but it totally different ways. Some are simply irritating, some are constantly debilitating. Some are always there, some come and go, improve and deteriorate. But there’s never a day when I’m “well” anymore, in fact I don’t think I know what feeling “well” even is these days. But after all these years this is my new normal and I have no choice but to be okay with that. Anyway let’s do this.
Asthma – I’ve had asthma since I was 6 years old, I was diagnosed by an on call doctor at my nans house, I’ll always remember that for some reason. I was given this inhaler that you had to break apart capsules to get the powder out. My asthma journey has been up and down, it was always mild as a kid but also clearly there and I’ve been medicated since I was diagnosed. A few years ago (4 years if I had to guess) my dad ended up in hospital and the stress of it went straight to my lungs basically *I have no idea how else to describe it* and my asthma went from mild to moderate. I had multiple visits to the GP and in house asthma plans agreed with by my asthma nurses. From then on my asthma has always flared when I’ve been stressed, usually requiring steroids (now if my life could just be less stressful that’d be great). When we moved to our current house my allergies came out to play (as the previous owners had cats) and my condition went straight to severe. I was under a hospital consultant by now, on nebulisers four times a day and steroids for 9 weeks. Everything was slowly reduced and now I’m on a special inhaler and anti-allergy medication especially for asthmatic reactions. I have a nebuliser at home and emergency steroids. I have to do my peak flow 2-4 times a day and if my readings drop below a certain number it’s nebuliser time, if they continue to drop then it’s onto the steroids. This works well and keeps me out of hospital *many bonus points*
Allergies – I have these wonderful progressive (I can them surprise) allergies where my body decides it randomly wants to become allergic to things it wasn’t previously allergic to! Thankfully I *currently* only have one allergy that produces a full on anaphylactic response, The rest are uncomfortable, annoying, painful but not life threatening *bonus*. I take high dose antihistamines daily and carry two Epi-pens, I also keep a food diary of everything I eat and any reactions so I can work out what surprises I have this week!
ME – okay this is the big one. I’m not going to go into it in too much detail here because I’ll likely be talking about it a lot throughout this blog. This is the disease that took my life away (dramatic I know but true nonetheless). This is the one that means I live with constant headaches, joint pains, light and sound sensitivity, dizziness, confusion, weak muscles and nausea. This is the one that causes me to be mostly house bound and often in bed. This is the disease that means I require help in practically everything I do. This is the disease that causes me to forget my name, to say things backwards or to completely loose my words. This is the disease that regularly traps me in my own body, so I’m wide awake but I cannot move, I cannont communicate. This is the disease that means I’m not the mother I want to be, the midwife I qualified as or the social worker I studied to become. This is the disease I WILL NOT let win. *so yeah me and ME not friends*
Fibro – Fibro and ME are friends , they tend to come together neither really likes to be left behind by the other, isn’t that wonderful *hi there sarcasm*. Fibro is the other disease that massively impacts my life. This comes with many of the same symptoms as its bestie but I likes to bring added extreme muscle pain to the mix *party on*. This pain is, well, a pain but something a lot of people don’t tell you is that it likes to mess with you, it moves. Just when you’re used to one part hurting and have worked out how to sit/lay/mobilise with that area hurting it moves, to another random muscle venue (usually because you worked out a way to sit/lay/mobilise). So it’s literally a pain in the…. ar…. er… everywhere!!!
Anxiety – anxiety is my long term buddy *cough* sarcasm *cough*. It’s been around making things scary since I can remember. It’s normally totally irrational (I have yet to have an anxiety attack in a legitimately life threatening situation) but yeah sleeping in a difference house, full on attacks, my brain is so clever. I have been on many different anti-anxiety drugs, but currently on setraline which seems to be the most effective drug ever!!!! I am usually pretty good at controlling (and hiding) my anxious side but I’ve had a lot of experience. My BIGGEST triggers are family and money (or lack of). Which is problematic as we live very tightly pay cheque to pay cheque. GAD gets added in here, I was diagnosed with this when I was pregnant with wildchild and was definitely MUCH worse in pregnancy.
As for the PS and the spinal problems these are relatively new problems. They are likely to have been caused by spending so much time bed and wheelchair bound. PS affects my hips and lower spine, and it constantly painful, the degree simply varies. The spine problems are that 1) my neck curves the wrong way 2) I have two small curvatures one in between my shoulder blades ending around sternum level (causing my ribs to be slightly deformed) and a second in my lower back (with a lovely perfect bit of spine in the middle – I’m very proud of my perfect bit of spine) 3) I have an anteriorally slipped disc around hip level. I’m under a chiropractor for the spinal and hip problems and he has been amazing, especially as I was incredibly doubtful it would help. Some of these problems come with the added bonus of frequently trapped nerves in various parts of my body *yay*.
So yeah, that’s me and ongoing collection of chronic illnesses, there are probably more that I have forgotten and there are likely to be more I collect in the future as a result of treatment for these ones (for example I have gastritis from long term high dose pain medication without stomach protection, I also have IBS but that is caused by the ME and the allergies not a separate condition of its own). I am also having ongoing cardiac testing to work out why I’m always tachycardic. So follow me as I undoubtedly collect more whilst trying to rid myself of the diseases I’ve already got!