Friday, 9 October 2015

Quiet

I'm aware I've been quiet lately. There's been a few bits going on, and I've been trying to get stuff together for my little venture that I talked about in my last post. Things are slowly coming together for it, and there should be further updates soon, yay!

In other news I return to physio next week. This is my returning session after a course of hydrotherapy. This is the set of sessions where they are (supposedly) going to decide if I need to be referred back to a specialist, and if so, which specialist. Their current cause for concern is the recurring numbness I get down through my legs and into my hands at random occasions.

I've also currently got the lurgy of some description. My other half has come down with a stinking cold, and everyone has work has colds. I seem to have avoided the sniffly, snotty, disgusting bit and instead have a horrible cough and constantly feel drunk - not the good kind either unfortunately. The cough is doing my head in because I've now reached a point where I have to hold my ribs whilst I cough, which removes my ability to cover my mouth. Nothing something particularly pleasant when I have been brought up to cover my mouth to minimise the risk of spreading.

So my plans for this weekend are now to rest, work on plans for my little venture, and basically self-care, to try and minimise how much this cold/lurgy/illness wipes me out.

And if all else fails, I'll find pictures of puppies to cheer me up like this one from this set of adorable pictures:



Wednesday, 2 September 2015

Exciting Times Ahead

I've not written since my last bad spell. It's naughty, but I've been doing quite a lot and kept getting headaches etc so was avoiding computers where possible.

BUT NOW we're running at a good normal level (normal by a spoonie's standards, not a health standard) and I've got some exciting plans ahead.

I've quietly been working away on Christmas presents over the last few weeks as I like to make quite a few bits and pieces (you can see more about this on my other blog here) for family and friends for a personal touch as opposed to "here's some generic Christmas present that I spent £50 and 5 minutes on". One of the presents I decided to make included some coconut oil based lotion bars. I invested in a few bits and pieces to make these bars, and found some recipes on Pinterest and cracked on with making them. I loved how easy it was! It got me thinking - I want to not have to work full time (in an office for some one else anyway) - I'd love to work for myself and being able to work on the good days and rest on the bad days without having to call in sick to some corporation who don't care.

So, I had a good think, and then I remembered that a little while ago, on Tumblr, I saw a fellow spoonie appealing for some help. They run their own little Etsy shop selling homemade bathroom products that are suitable for spoonies with sensitive skin. She's based in the US, and was appealing for UK partner as it's insanely expensive to ship between the 2 countries. So, I popped her an email and we've been talking and I might end up being her UK partner.

Nothing is confirmed yet, we're still in early discussions and haven't begun any negotiations, but hopefully, watch this space and I may be soon doing a little advert for Spoonie-Friendly bath products!

I know it won't be a massive money-maker to begin with, but I'm hoping that with some time, and a few other plans I have up my sleeve, I might manage to drop to part-time once my contract at this company expires. You never know, I might even be able to give up working for other people all together!


Wednesday, 19 August 2015

Take the Good with the Bad

Last week was not a good week. Last week was a "cry and wish I was dead" kind of week. I don't often get that dramatic, but I was in such horrific pain that I really did want to just die a temporary death until the pain was gone.

Sadly that isn't possible though, and I endured the pain all week long. If I had been at my last job, I probably would have called in sick for the week and just accepted that it was better for me to stay in bed and rest than to waste their time having me there. Unfortunately that didn't feel like an option this time as I am in a new job and still on probation.

Whilst my job is aware of my health issue, after all they allow me time out to go to my hydrotherapy appointments, I still do not feel it is well tolerated. They are supportive and say all the things they have to say (thank goodness for discrimination in the workplace laws) but as a whole I feel that calling in sick for it would probably not be graciously accepted, they would tolerate it but not if it became a regular occurrence - and by regular I mean once every 3-6 months.

So, I dragged my sorry butt into work every day last week. I was emotionally and physically exhausted. I cried nearly every evening because I was so tired and in so much pain. It was not a pleasant experience.

Needless to say though, this week is - so far - a good week. My pain levels are low. My tiredness levels are average. I haven't cried yet this week. Okay, well maybe once, but that was about something unrelated.

Anyone who met me this week would probably have absolutely no idea that I am as sick as I am. Anyone who met me last week probably thought I was the world's grumpiest bitch who couldn't walk like a normal person. It's funny how things can change in just a few days.

What I have learnt from this is all though is that I need to try and figure out a job I can do from home and still make the same amount of money from. I genuinely do not think I have the energy to continue to work full time and have to actually physically get up and go into an office everyday. I'm reaching a point where I struggle to even brush my own hair every day. So, the hunt for a run from home business begins.

Wednesday, 5 August 2015

Hydrotherapy Part 2

Not too long ago, I blogged about how I was going to be starting a course of hydrotherapy treatment to try and assist with my pain, So far, it's inconclusive, but this is due to my first appointment being cancelled and rescheduled 2 weeks later, my new first appointment and second appointment going ahead, and then my third appointment being cancelled for an indefinite period at the moment.

None the less, I thought I should write about it, because from the 2 appointments I've had so far, I'm intrigued and looking forward to actually have continuous appointments, They are hard work these appointments, don't get me wrong, but the results so far have been promising. After both appointments, I've had to go straight into work and do my job as normal; I've come home, cooked dinner and then go to bed. And both times I've slept straight through the night and not had any issues during the night (only when it comes to waking the next day - but this is a forever issue)!

After both appointments I've also been able to go the whole day without pain medication. It would seem that that 20+ minutes in a really beautifully warm swimming pool does help ease my pain.

Needless to say, I was therefore gutted when I received a phone call the afternoon before my next hydrotherapy appointment, advising me they would have to cancel. A pipe had burst in the pool and it's going to be at least 2 weeks before it's fixed. Devastated would actually probably be a slightly more accurate description of my emotions.

Hopefully, once the pool is back up and running I'll be able to get into a routine again with going, and really start to see some long term growth rather than just the short term, as quite frankly I need a holiday from my pain levels right now.

And now, because I've not posted a picture in a while, and because I need a little pick me up, here's a picture of a fluffy bunny found on Google:


Tuesday, 21 July 2015

Are You Sure You Weren't Drunk?

Yesterday I went into work with my ankle in a support and generally looking a bit sorry for myself. I was, and still am, in a lot of pain. In the morning every joint bar my left shoulder and elbow hurt. Now everything hurts. It was that kind of day.

Needless to say though, my colleagues were intrigued. This was the first time at this job that I've come into work in such an obvious state - not bad considering I've been there 2 months and was in a pretty bad way last week. They kept asking what had I done to my ankle - "nothing" I said, as I genuinely haven't done anything to it beyond exist. I explained "it's just my body hating me, it's normal".

This explanation wasn't good enough for some people though. Being the youngest member of my team by quite a bit, it prompted the inevitable question from the elders; "were you drunk?"

"No, I wasn't drunk," I was having to explain - to be honest if I was drunk and had injured myself I would just be honest. Yet again I had to explain the effects of this disease and what it does to my body. Yet again I had to feel like I had to justify my responses.

It's nothing against my work colleagues - they don't understand. Not many people do unless they know some one who has EDS. But it is difficult to feel like you constantly have to explain that you have no idea what you did to be in this much pain, you just are. And I don't know about other zebra's, but I'd be so honest if it was a drunken incident or such like, simply because I'd be chuffed to actually know what had been the cause of the pain on this occasion.

Anyway, fingers crossed my early(ish) night has sorted me out and today might not be so bad. I'm going prepared - ankle support on, medication at the ready. I'm just hoping it might be a little easier today.

Monday, 20 July 2015

Hydrotherapy

I can't remember if I said anything, but I was back in physiotherapy this year, trying to work on my hips and manage my pain levels better as they had been getting worse.

Anyway, I was doing that, and the physiotherapist felt that whilst I was getting stronger, it still wasn't helping with a lot of issues I was getting that even I shouldn't have been getting with my health issues. We're talking pins and needles in the groin, randomly numb feet, loss of sensation in my limbs, etc. So, we had a talk and decided I'd finish with physiotherapy, but get referred to hydrotherapy to see if that helped some more, and from there I could go back to physiotherapy, and maybe get referred to a specialist again if required.

That was back in March we had this conversation. In the middle of June, just as I was heading on holiday for 2 weeks, I got a phone call from the hospital to book me in. I missed the call and couldn't call them back until my return from sun, sea and sand. We're talking this sort of sun, sea and sand:

Stunning right? Although I digress...

So I called the hydrotherapy team back when I returned from holiday and booked my first appointment and arranged the time off from work. Unfortunately the morning of my appointment they called me to cancel as the chlorine levels weren't right. We're trying again this Wednesday. I can't lie, I'm really looking forward to it, and I'm desperately hoping it's going to help push me in the right direction, or if there is something more wrong with me than we thought, that they'll be able to figure it out quicker than they've taken to get to previous diagnoses.

Watch this space I guess.

Sunday, 19 July 2015

Today has not been a good day.

This week has been pretty average, but the last 24 hours haven't been great. My ankle went a few days ago - again - so went straight in support. It made driving difficult and just general walking a lot more tiring as I was dealing even more constant pain. I soldiered on though, as that's just what you have to do when you have Ehlers Danlos Syndrome.

Last night though I went out for a meal with some friends; we ate, we drank. It was lovely. There was a ridiculous amount of laughter (as there always is with this particular group of friends), but whilst laughter is all well and good - it does hurt my ribs and my jaw an awful lot when done in excessive levels.

Needless to say by the time I got home and to bed, I was feeling pretty sorry for myself, so I took a couple of my amitriptyline tablets that I use before bed time on bad pain days. Normally with this, I wake up a bit groggy and a bit tired. Today however had to be different.

I had booked to get my nails done today, as I knew I'd be feeling a bit sorry for myself by now with my ankle in the state that it is, so after eventually waking up (apparently I can sleep for 10+ hours no problems what-so-ever on these tablets), and dragging myself through the shower, I got dressed and headed off to town for my nail appointment.

All well and good, but about 5 minutes into my appointment, I start to feel funny. I can feel my head spinning, the walls appear to be shaking, I'm overheating... I realised I'm on the edge of passing out. At this moment I'm convinced that I can hold it together - a few deep breaths and I'll be fine. But I'm not fine. I don't want to make a fuss. But then I realise I don't have a choice. I have to stop the beautician part way through, ask for a glass of water and to borrow one of their massage tables so I can lie down.

I'm completely on my own and have never been so embarrassed. At least when I am with my mum or a friend, they can take care of me and distract me from how humiliating it is, but there was no one there this. I just wanted the ground to swallow me up, because of course after this, everyone is fussing over me, making sure I am okay, that I don't need to go home, etc. I managed to finish getting my nails done, gave a generous tip because I was so embarrassed (and I don't tend to tip as it's not necessary in the UK) and I ran back to my car and got home as fast as I could.

I still don't feel quite right, and I'm sure it's something to do with the amitriptyline as I don't often get like this, it's just infuriating as I never have any problems on these tablets. But I do seem to be finding this more and more lately, my body seems to go onto little rampages against itself.

I'm not really sure what is causing it, but hopefully it'll sort itself soon.

For the time being though, I'll stick to water and plain basic food, and hope I feel better soon.

Friday, 8 May 2015

The Importance of Comfort

I recently had some time off of work due to some un-Ehlers-Danlos-Syndrome-related issues and was devastated to discover upon my return that my beautiful comfortable desk chair that was fully adjustable had been taken.

It had been replaced with an old, only partially adjustable, terrible desk chair. This may seem like a small thing, and in reality it is, but none the less I was devastated.

My chair had taken me the first 3 months of being in that role to adjust and get comfortable. It had an adjustable air back support that I could adjust depending on how bad my pain way that day. It made sitting for 8 hours a day far more do-able than I've ever known it to be. And it was all gone.

I have now been back for just over a week, and I have managed to get this chair to a passable position, but it is still not right, nor will it ever be right. I cannot ask for a new chair as I am only at this role for another 5 working days and then I'll have a whole new chair to battle with.

But I thought it was important to write about this. Because a lot of people who don't suffer with chronic pain do not understand the importance of a comfortable chair. Nobody, bar one close friend at work, really understood why I was so annoyed about my chair being swapped for this crap one. Mainly because they don't know what it is like to live with chronic pain. They have no idea what it is like to find just small things that ease your symptoms ever so slightly.  So I thought I should write about it so that other Zebras know they are not alone when they "overreact" as other people may deem it. It is those small things that matter. It is those small things that help to make life slightly more bearable on a bad day.

Oh, and anyone wondering what chair I like? It's not a super duper all singing, all dancing time that'll make most finance departments go "hahahahahahaha are you having a laugh?! No." Nope, it's a fairly standard chair:
I'm not saying it works for everyone, but mine has an air pump for the back support, and for me that is the lifesaver. I just need to find one that also has a pump for the seat section to allow me to soften or harden it depending on what my hips need that day but for now I can survive.

Saturday, 2 May 2015

What Are You Up To?

This last couple of weeks I have been doing my upmost to maintain my rate of exercise. It's been harder since I've been back at work again, but I've been trying to do at least 10 minutes of exercise everyday. It's hard work but it's worth it for the strength I am slowly gaining.

In other news, I've had a bit of time to myself at home lately, so I have been taking full advantage of this and started watching "House". I think it may be my new favourite series! In the first episode of the first series they discuss something that is quite close to my heart - the zebra analysis. The main characters are discussing how they are always taught that when hearing hooves to think "horses", not "zebras". This means that normally it is a simple reason not something complex and rare.

Whilst this is generally a good principle to work on, it is part of the reason getting a diagnosis as a Ehlers Danlos Syndrome is so hard sometimes. Because it is easier to pass it off as something more common than something unusually and hard to test for. Afterall, did you know that despite Ehlers Danlos Syndrome Type 3 (Hypermobility) being the most common type of EDS, it is also the one that cannot be diagnosed by a genetics test as they do not know what gene causes it.

As a result of House being the doctor that looks for zebras rather than horses, it means this series has complete absorbed me.

Thankfully it's a bank holiday weekend, so I'm wasting no time at all on "wasting" as much of the weekend as possible watching as many episodes as possible. I'm suckered in, it has to be said!

Thursday, 23 April 2015

Exercise Time

Along with failing to blog over the last few months, I also failed to lead a particularly healthy lifestyle.

As a result of this I gained quite a bit of weight and gained 2 dress sizes. Needless to say this hasn't helped my pain levels, so as of the last few weeks I have been working hard to fit in more exercise without overspending my spoons, and I've been trying to make healthier food choices.

One of the easier things I have found to fit into my routine in a walk once or twice a week with my mum. I go to her's straight from work and we go for a walk depending on how well my joints are feeling. It gives us an excuse for some exercise, and at the moment we manage between 1 and 2 miles. It may not be much, but it is helping.

I've also been off work for the last week or so due to unrelated health problems, and have been using this as a reason to do 20-30 minutes of exercise every morning before I shower. I'm only doing this on the days I feel up to it, and I push myself as hard as I dare. I have learnt that if I feel initially tired but have minimal pain levels, doing some exercise actually perks me up.

The exercises I have been doing in the morning are linked to items I have found on Pinterest (gosh I love Pinterest), and I've combined various suggestions into a workout that works for me. This consists of crunches, planks and various ab related exercises. Having a strong core is key to being able to manage my condition I have found.

If I really feel up to it, I try to do some slightly higher impact exercises, jogging on the spot etc to try and further increase my body's strength.

Anyway, I've not really managed to lose much weight yet, but I can feel my strength improving, and I'm hoping this will help me control my condition better.

Tuesday, 21 April 2015

Long Time, No Blog

As per usual, I have been dire at updating this thing. I think it is partly to do with my shyness regarding updating it when around my other half (god knows why, but it is the sad truth). I am determined to get better at this though.

So what has happened in the last 9 or so months?

Well, I went back to the doctors as I was concerned my hips were getting worse despite me still doing my physio exercises. She referred me back to physio and upped my dosage of amitriptyline. I have to say it helped, and physio was interesting this time around.

I had to wait around 3 months for my referral to actually come through (good old NHS, but musn't complain!). Once I started though this physiotherapist I was seeing was very helpful. I got given a fairly standardised set of exercises to add into my current ones, but she also began to work on my back during sessions. Not in a providing exercises sense, but she began to massage and put pressure on different points of my spine. She seemed quite concerned by the fact I get pins and needles on a daily basis in various points of my legs.

So, after about 4 or 5 sessions of physio she has decided to refer me to hydrotherapy to see if that helps. After that has been completed then I will be re-evaluated by them and they will decide if I need to be refer back to a specialist.

Need to give it time for certain, but watch this space and we'll see I guess.