How are you today

Dear Diary,

I'm sitting here in agony because I went for a walk on Tuesday, that's it, that's all I did, I walked, half way to the beach then it rained so I turned round and came home. And along the way my hip went twinge, so every step I took felt like someone jabbing a knife into the joint.

It's been three days and I'm still suffering from that way, my joint refuses to roll the full way round when taking a step so I'm limping, sitting or lying down the area just aches. But I can't not walk places, and I can't not exercise, so I do what I can to ensure I don't stagnate and just suffer the pain afterwards. And this isn't new to me, I know something would happen, that's why I took painkillers out with me on my walk.

I'll be honest, I forget half the things wrong with me, not that I forget I have them, just their names and the like, that and I don't like the focus to be on my health problems over me as a person. But I thought today I'd write down what's going on with me health wise because to be frank I'm wallowing and feeling slightly sorry for myself.

Hypermobile Ehlers-Danlos syndrome (hEDS)

I was diagnosed with this many years ago, so long ago that I tend to still call it joint hypermobility disorder and forever I have it. I'm used to the pain, not in the sense it doesn't bother me, but in the sense I don't remember what it's like to not ache all the time.

People with hEDS may have:

• joint hypermobility
• loose, unstable joints that dislocate easily
• joint pain and clicking joints
• extreme tiredness (fatigue)
• skin that bruises easily
• digestive problems, such as heartburn and constipation
• dizziness and an increased heart rate after standing up
• problems with internal organs, such as mitral valve prolapse or organ prolapse
• problems with bladder control (stress incontinence)

I suffer with all but the bottom two thankfully, I also have a slight sideways curvature near the base of my spine which causes the muscles to pull all the time, because while the tendons holding my joints are loose the muscles attached to the joints are actually slightly too short, nothing drastic, just enough to cause pretty much constant aching and the above mentioned hip problems.

Alongside the digestive problems as mentioned for hEDS I also have;

IBS and stomach ulcers.

I have to take daily medication for. While stomach ulcers are actually quite easily treatable it seems they like to return on me fairly frequently, so the doctor just kept me on the medication, seems to do the trick though.

Asthma.

Diagnosed at 10, was pretty bad as a child, not quite so bad as an adult but I still get terribly breathless if there's high pollution or fog about, I've had a few attacks over my life that's ended up with me in hospital, it's not a nice experience I can assure you of that. 

I have two inhalers, a preventer called beclometasone which is steroid based and reduces inflammation in the lungs that can act as a trigger for an asthma attack, and a reliever which contains salbutamol to quickly opens the airways during an asthma attack.

I hate salbutamol, it causes me to shake so badly I'm practically useless at anything after taking it, but needs must.

Asthma means that when I get a cold or other illness I have to be careful because they tend to settle in my chest and cause chest infections, I'll almost almost always have a long lasting cough after any illness as a remnant of when I had whooping cough as a child.

Reynaud's Disease.

With Raynaud's, arteries to your fingers and toes go into vasospasm when exposed to cold or stress, narrowing your vessels and temporarily limiting blood supply. Over time, these small arteries can thicken slightly, further limiting blood flow. 

For me it always seems to start in the first fingers of both hands then spreads across my hands, once it starts my fingers go bone white as the blood is restricted from flowing well and nothing short of putting my hands on something very warm will stop the attack. Afterwards when the blood returns to those areas they flush scarlet and it is extremely painful, like an extreme case of pins and needles coupled with burning. It also occurs in my feet, but my hands suffer it the most.

Anaphylaxis.

This is a fairly new one still to me, I've only been suffering such extreme allergic reactions for six months or so, I'm still waiting on my appointment with the immunologist to figure out what it is that's trying to kill me off. Anaphylaxis usually develops suddenly and gets worse very quickly.

The symptoms include:

• generalised flushing of the skin
• nettle rash (hives) anywhere on the body
• sense of impending doom
• swelling of throat and mouth
• difficulty in swallowing or speaking
• alterations in heart rate
• severe asthma
• abdominal pain, nausea and vomiting
• sudden feeling of weakness (drop in blood pressure)
• collapse and unconsciousness

It can be lethal because the swelling can stop your ability to breathe, or you could choke to death when you fall unconscious. It's also incredibly painful and traumatic to go through an attack.

A couple of hideous photos to show how it looks in varying stages.

Top left;

Anaphylaxis without the obstruction of airways, basically just a severe allergic reaction, my forehead, nose, ears and chin all swelled up and as you can see, went scarlet. Was also extremely itchy and hot.

Top right;

This was taken at the hospital after I went into anaphylactic shock and collapsed, it affected my airways, lungs, tongue and throat this time unlike last time. Everything swelled up as you can see (this is the improved from in the ambulance me) and I collapsed, the paramedics saved me because otherwise I'd have suffocated and/or choked to death.

Bottom;

This was over christmas, the next day after the attack during the night which I didn't get photos of, it was similar in severity to the top left photo, didn't affect my airways, did swell up my eyes as you can see the vestiges here.

I usually look like the photo of me on this blog up the top right side.

Other health issues.

General health issues, including;

• Being short sighted and still having pencil lead in my one eye and the other eye attempting to detach its retina (settled down for now). 
• Palpitations and erratic heart beat, runs in the female line of the family, lucky me.
• Middle of my spine is borked, no real other way to describe it, I was punched very hard on that area as a teen by a bully in school and it's never been right since. Much pain, many stiffness.
• There's a general consensus that I have fibromyalgia like my grandma, I fit all the signs and symptoms but I haven't been diagnosed because every doctor I see doesn't believe it's a real thing. Which the issues I already have and the treatments I receive for them it makes no odds to me to have a formal diagnoses, would just be another tag. All I know is pain sucks.

Now before you think I've listed all these for attention/sympathy let me stop you there, I don't want sympathy, wouldn't mind some understanding when I say I'm in pain though. And the only kind of attention I care about is to show others that they are not alone, people can suffer things, visible and invisible problems, just because you can't see the problem doesn't mean it doesn't exist.

Another thing is, personally I don't claim anything, I'm not on benefits and I work full time. I don't judge anyone who does otherwise, I just know I'd be bored to tears without something to do, however, just because I work also doesn't mean that I don't have health problems too, they're not restricted to a certain type of person, health problems affect everyone.

Even though this post is longer than I'd like it to be I get the feeling I've forgotten something, wouldn't be the first time I've forgotten something, I do have a notoriously poor memory. So I might yet mention something I didn't cover here. *shrugs*