Sunday, 8 December 2013
Needless to say my colleagues and other half took the piss tremendously. Every time I had to speak to them they would mock me with those wonderful words; "speak up, I can't hear you" and other taunts to that effect. Things got worse though, and eventually and I couldn't talk beyond a very strained whisper. It was exhausting, and in the end I left work and came home as sick because it was exhausting and causing me quite a bit of chest pain. The tight chest was getting worse every time I tried to speak, I was getting out of breath and dizzy. Nightmare.
Off I went to the pharmacy; can you give me anything for this, I think I have a chest infection. "No" came the answer, "you need to get yourself to the walk in health centre". The perfect thing to hear on a Saturday.
Anyway, to cut a long story short, I went to the walk in centre (accompanied by the best person for these situations, my mum) and after an hour and half wait, got told I have laryngitis. An instant ban on talking was applied. I need to rest my vocal chords.
And the reason for the short breath? Well, it was more than likely that I was stressing myself out from not being able to talk, and having to work so hard to be able to talk. But because I was working myself up, I was making myself get tight. Something I'm good at. Whenever I've had problems with my body, the area around it seizes up. Pain in my knee; ended up on crutches because all the muscles around it went solid. Pain in my shoulder; end up unable to move shoulder and with neck ache too because the muscles went solid. Pain in my foot; end up unable to walk on it because the muscles has seized badly.
The seizing up of muscles is apparently related to how poor I am at managing my pain and managing my condition. I guess it's understandable. Lesson is learned each time, and conveniently forgotten when the next acute pain occurs. Fun and games.
Thursday, 5 December 2013
I've developed a cold (and I've not had a full on ridiculously bad cold for years!) and it is exhausting me. My ribs hurt from coughing and sneezing. My legs and back and body generally ache. I'm rather tired of it.
But we mustn't whinge. Part of the reason I am feeling so terrible is because I've not been making the effort to maintain my exercise routine. I've not been to the gym for about 3 weeks, and I've been pushing my body too hard in the jobs that I do at work. I should know better, but I think I've gotten stubborn again lately.
It's easy to step back and go "right, I need to do this, this and this, and I'll be feeling better" but the reality isn't always that easy unfortunately. I need to get a motivational system in place so that I can get better at maintaining my health.
I will get this figured out. Hell, I have no choice. It'll be 2 years this coming January since I got diagnosed. I feel like I should know better by now; much better.
Sunday, 3 November 2013
It was crap to be reminded that the only people who left before me were the ones who got kicked out for being too drunk, and that I had to leave my friend in town to stay at some one else's because I needed my bed, but I knew I couldn't push myself any further otherwise I'd be paying for it for days to come.
By learning my limits, it's meaning that I'm getting more control over my life. I'm still not there yet, but getting more confident with it.
Sunday, 27 October 2013
I made an apple crumble for me and the other half to enjoy. I, thankfully, get to cut out one of the difficult sections of the recipe as my mum is incredibly understanding and helpful. She peels all the apples for me, and stews them, providing me with containers already weighed out to the correct amount to freeze & defrost when I need them.
However, to make the crumble for the top requires the rubbing technique, a technique that can only be done by hand. And this is a technique that requires repetitive movements of the fingers and pressure applied to create the right consistency. Shouldn't be too difficult for most people, but for me, I suffer quite badly with pain in my fingers at the best of times, but doing this just makes it worse.
Never the less, I took my painkillers, psyched myself up and then powered on through. It had been a good day in general so far, so I figured that this shouldn't push me over the edge. And thankfully it didn't seem to. My fingers ache, even whilst I'm typing this, but it's not unbearable.
And here's the finished product:
Right now, as I type, it should be gone 10am, and I'd be feeling guilty about still lazing around in bed rather than getting up and going to the gym and making something of the day. Instead, it's just gone 9am, I'm about to grab a coffee and then it's off to the gym I go. Woop!
I'm still waiting to hear about the interview. They said that I might know by the end of Friday if the answer was obvious, but I've not heard, so now I'm going to have to wait until Monday. Thankfully that's only a day away now, but this weekend has definitely been wished away with my desire to know whether I'm going to get to transfer or not. I had to explain to the interviewer vaguely about my condition though as he was asking me about working in other departments including stock management (which requires lots of heavy lifting and needless to say isn't a great idea for some one like me). I know they can't discriminate against some one because of their condition, but it does always make me nervous making people aware of it before I've even got the job.
Only time will tell though whether I've mucked up my chances by not being able to be fully flexible in my approach to other departments. Hopefully he'll see past that, and see that I could be a great member of their team, and if he does, then I promise not to whinge about pain to anyone for a whole week.
Friday, 25 October 2013
Today is *hopefully* one of those days. I've got up early for my interview (see yesterday's post) and once it's done, it's home for a quick change and then I'm hoping to tidy my spare room and organise my filing system. Add to that maybe doing some baking, and maybe even squeezing in a visit to the gym, it should hopefully be a good day!
I guess I've just got to aim to achieve as much as possible, without overdoing it. I'm still trying to learn my limits, but I'm slowly getting the hang of this sh*t.
Thursday, 24 October 2013
A couple of months after my diagnoses I managed to land a good job with a fantastic company; one of the best employers in my sector in fact. The only issue? It's in a town 40 minutes drive from my home. The majority of the time, this drive is bearable. However, as soon as there's any issue on the main motorway between my home and this town, then it becomes a physical nightmare. Either you're stuck on the motorway at a complete standstill, unable to shift position a vast amount; or you're stuck in long lines on the back road meaning you've got to exercise your clutch control.
Both of these situations leave me in an incredible amount of pain, discomfort and exhaustion. And then, when I eventually manage to get to work, I have to work the remainder of the day being as chirpy and cheerful as possible. Fun times. I think not.
Add to this that it is a low wage (a good wage, but lower than the cost of living wage) and the amount fuel costs these day, this all makes it a bit of a nightmare and not ideal. What makes it more frustrating is that there is another branch of this company 5 minutes down the road from me. So, I've been waiting for jobs to come up there, and one finally did. Tomorrow I have got my interview, and to say I'm a bit nervous would be fairly accurate.
It has finally reached a point with the regular traffic issues, that if I don't get this transfer this time (this will be the 2nd attempt I have made this year), then in the new year, I will have to look for a position in my town but for a different firm, which I don't want to do yet. Quite a bit rides on this, and my health (and sanity) will both be affected quite drastically by this opportunity.
Only time will tell, but here's hoping.
Wednesday, 23 October 2013
The trip to the loo was a necessity, so I powered on through, trying to remember how on earth it was possible to get pain in your toes and the very tips of your fingers. I climbed back into bed and fidgeted restlessly. No position was comfy, what I needed was drugs.
Thankfully, because I am used to these random onsets, I always ensure I keep water and at least one strip of both medications by my bed. So within a couple of rolls from side to side of the bed, I had popped the gut protectors and the painkillers. All I had to do was lie there and wait. After a while, the pain started to ease enough that I successfully managed to get a cup of coffee and a bowl of cereal (reasonably low rating on the amount of effort required to consume). With that, I grabbed my laptop charger (as thankfully I had brought my laptop up with me last night), plugged it all in and settled for what would seem to be a day in bed.
I can only assume this rough day has been brought on by a heavy session at the gym on Monday evening followed by a long morning of shopping with my mum yesterday. I still have days where I forget I need to pace myself, that I'm not a normal human being.
I was hoping to go to the gym again today, but as I woke up at 9, and it's now 2 and I've yet to leave my bed for longer than 5 minutes, I don't think this is likely to happen. It becomes a bit of a catch 22.
All I can do is hope that if I can drag myself downstairs and do a teeny tiny bit of very light exercise, then I might be ok enough to have a vaguely normal afternoon. A girl can hope anyway.
Tuesday, 22 October 2013
Being a girl with hypermobility, when it becomes that time of the month, my joint pain flares up even more so than normal. I also suffer with horrendous cramping, all of which makes wanting to leave the house near on impossible. Going to the gym helps with this all though. The exercise alleviates the cramps.The exercise strengthens my joints, making them less painful.
So now, being the girl that I am, all I want is new workout gear!
Current lusts include:
Monday, 21 October 2013
I was so proud of myself! I actually did it, and I'm doing it again tonight. As soon as the other half gets home, we're off to the gym, and we're gonna work up a sweat, and then we're going to come home and I'll cook us dinner. Because I actually get energy from the gym. It's shocking, it really is.
Unfortunately I've not started to feel the effects of it yet, but then again that would be weird if I could after only one proper session. Over the next week or so though, I should hopefully be able to minimise the crappy ache I constantly have through my entire body, and actually start to just have a mild ache. I'm so excited to be living in a minimal pain world again.
Tuesday, 15 October 2013
In the last week, I have done sweet f**k all. The hospital appointment did result in my being off work for a week but I failed to contact the girl I had blogged about. I really wish I could get over my anxiety about hassling people. I know I'm probably not hassling them, but I always worry I am.
The gym induction that I went to was really good and I am totally pumped to be back at the gym. Needless to say, I was unable to go at all last week after what they had done, but I am going tonight for the first time since induction, and I cannot wait! It's going to mean actually getting a bit more dedicated to it, but I am ready for it. Exercise means stronger joints, which means happier joints, which makes for a happy zebra.
Friday, 4 October 2013
And the reason I'm now bothering to update my blog? Because I have a cold and I feel like poo. What does that have to do with Ehlers Danlos I hear people say? Well, I'm in the middle of a huge flair of pain because my body is so busy fighting this darn cold, that it's forgotten how to keep my joints normal. My finger's are so swollen I can't remove any of my rings off. I can't stand for more than 30 minutes at work, and all I want to do is sleep, more so than normal. But it's all good, it's only a cold after all.
In other news, I am taking up the gym again. I am, however, hopefully destined for success this time, as I have managed to convince my other half to join up with me. This will hopefully mean I'll remain motivated because I won't only be letting myself down, but letting him down too. And we can't have that now, can we?
We have an induction at 9am tomorrow morning, and I'm not going to lie, I'm actually quite excited. It's at the same gym I was a member at before, but I never had a proper induction there, and I'm hooping this personal trainer might set me some goals to work towards so that I can get my butt into gear. The only slightly depressing thing is, I'm going to go and do this, and then there's a huge chance I'm not going to be able to go for a week as I've got to go into hospital on Monday for another condition, and if they do what I want them to do, then it'll put me unable to work or do anything really for a week. Yay me.
All the time at home I'm potentially going to have next week though, post-hospital, could potentially lead to be a good thing. A little while ago, I finally discovered some one else in the local area who has the same condition as me, or rather my dad found her. She's around my age, and after weeks of faffing around, I finally added her on Facebook and eventually got accepted. Since then though, I haven't brought myself to be able to speak to her. But hopefully, next week might be the week that I get my arse into gear and manage to send her a message asking her a bit more about herself. She apparently does a lot of blogging and magazine articles for people about Ehlers Danlos Syndrome, so it will be interesting to speak to her some more.
Monday, 29 July 2013
So, my goal is:
By my birthday this year (2nd December), I will have lost 1 stone and be a comfortable UK size 10. This should help relieve some of the pressure on my joints that has occured through my weight gain.
The only time that this weight limit will be permitted to increase is if the increase is due to muscle gain. If this is the case, I will endeavor to stay a size 10.
The action plan:
To achieve this, I am going to go to the gym twice a week, every week, without fail. This will most likely be a Wednesday and a Sunday as they are nights when my partner is out doing things as well.
Whilst at the gym, I will use the bike, cross trainer and rowing machine. Initially I will use each for 5 minutes and do two rotations of this per visit. As my fitness improves, I will increase the times or rotations.
I will also aim to swim 20 lengths at least once per week, apart from when I am unable due to it being time of the month. Every 2 weeks, I will increase the number of lengths I swim by 10.
Either before, after, or whilst at the gym, I will also do the 8 minute ab workout on Pop Pilates (I will link to this at some other time)
I will aim to do the 8 minute ab workout a minimum of 4 times per week; increasing to daily as my fitness levels improve.
To assist in the weight loss, I will also make my own lunch every day to encourage me to eat healthier.
Sunday, 28 July 2013
Yet again I have been failing on numerous levels. I haven't kept here up to date. I haven't been doing my physio. I haven't been going to the gym regularly. I haven't been doing Pop Pilates.
I have, however, been reading a book that has helped me to think a bit more positively. Now I just need to take those positive thoughts and turn them into positive actions. The book is called "Flip It" and basically teaches you to look at things from a different perspective. It's not all hippy dippy everything will be ok type of positive thinking. No, instead it teaches you to approach things from a different perspective to get a more positive result. It encourages you to ask "How" instead of "Why" because all to often "why" is used negatively; "why me?", "Why did this have to happen?", etc. An example they use is getting lost on your way to an important meeting. Normally you would ask yourself "why does this always happen to me?", "why did there have to be a diversion there today?" And all manner of why questions. Instead they suggest asking yourself "how did I end up here?", "how can I get back to somewhere I recognise?", "how can I communicate that I may be late to the people I'm meeting?"
All of those questions make you think more positively and encourage you to help yourself out of the situation. And this is what I want to start applying to my health, to my condition and to my general life. The book talks a lot about having clear achievable goals and an action plan for each goal, no matter how small. So instead of just saying that you will lose 1/2 stone by a set date; you would instead say that you will lose half a stone by going tp the gym every Monday, Wednesday and Friday and only have chocolate once a week.
Action plans make goals more achievable. And so, to get the ball rolling I have the goal that by the end of today I will have written out my goals relating to my exercise regime and weight by setting aside some time after I have showered and dressed and focusing on only that until my other half comes home just after 12.
Wednesday, 10 April 2013
So for the last week I have barely been able to leave my bed. Not from partying too hard, not from a bad flare up, but instead from norovirus.
Norovirus alone is bad enough. Norovirus as an ehlers-danlos sufferer is even more horrendous. The violence of throwing up hurts your back, shoulders, ribs, neck. Having to make sure you keep yourself clean whilst your hips and back are twisting and causing you agony. Having to physically run - something you avoid unless absolutely necessary because of the pain through your knees and ankles and hips and feet - to get to the bathroom. Yeah, it's not fun.
On a positive I have lost 5kgs, but even so, I think I'll be feeling this pain for quite a few days to come, and the tiredness I normally suffer from is going to be a hundred times worst.
But we soilder on. Because that's what zebras do.
Sunday, 31 March 2013
Not only have I been terrible at going to the gym, I haven't done a blogilates video for over a month again until tonight. And physio exercises have only been done at my physio sessions. These have now stopped. My physiotherapist told me she was proud of my progress and really pleased with how much better I seemed to be coping with my condition. All I have to do it maintain my motivation she said.
I'm trying to think of exciting ways to keep motivated, but I'm just running out of ideas. Bribing myself doesn't work; my other half is useless if I fail to achieve a task, he just tells me to try harder or to actually do it. I need to get my butt into gear.
Sunday, 24 February 2013
In the last 2 or so weeks though, I have gotten really naughty about doing it all. Last Sunday I came home and ate pizza rather than going to the gym. I swore I was going to do a blogilates video instead, and didn't. Until tonight, I hadn't done a blogilates video for about a month, because going to the gym counts instead. I'd also stopped doing my physio exercises at home, despite the fact that I can see how much they've been helping me. It's almost like I've gone "well it's helped me get this much better, I can't be bothered now." All very well, but I can feel the work getting undone quicker than I can redo it.
I did my physio exercises tonight and only managed 10 reps of each one on each side before I gave in. I was up to doing that twice over before I gave in; it burned, but I could do it.
I can see the work being undone, my back has started aching again, I've had a huge amount of pain across my shoulders and arms (although that could also be a combination of overdoing the housework on Wednesday, and the cold).
This is a reminder that I need to remain motivated. I need to take all the unhappy crap from the last couple of weeks and channel that into my exercise. Because to have control of the pain is the most satisfying thing, and I'll be toned and sexy. That'll be just what I need.
I need abs and I need muscular legs and muscular arms. Because then I will have control of my pain, and control of my body and control of my emotions.
Monday, 28 January 2013
Today I have over done it. Its easily done and it's frustrating when you realise how simple it would have been to avoid it.
To begin with I finally went and joined my new gym and did a work out. At my old gym I used to manage 20 minutes top of working out, and today I managed 45 minutes. Good perhaps, but it should have also my first reminder to slow down.
Then I cleaned the bathroom, had the sense to rest for a bit, and then went shopping for 3 hours with only one rest break. Definitely not enough for the amount of walking!
To top it all off I then had to do the monthly food shop with my other half. The problem with a monthly one means it takes a lot longer and you have to walk a lot more with no opportunity to rest.
Not one of those events sounds like too much, but combine it all in one day and you have one very achey and tired zebra.
The moral of the story? Know your limits and fit in your rest breaks!
Wednesday, 23 January 2013
There are numerous things to think about when you are contemplating which gym to join at the best of the times, and that just gets added to when you suffer with something like hypermobility syndrome. Below I've written a shortlist of things that most people have to take into consideration before picking a gym, and then I've added what extras some one with HMS has to think about.
- Location - Is it within walking distance? If not, how will you get there? Is it close enough that it doesn't become a big deal to get there?
- Price - What are your budgetary constraints? Are you planning on doing a pay as you go, or signing up for a monthly membership with a contract? How much can you justify spending on yourself? What's included in the price?
- Facilities - What equipment are you mainly looking to use? Is having a pool something that is important to you? Do you want to be able to use a sauna/spa pool/steam room?
Friday, 18 January 2013
Straight away the concerned boyfriend, who also has a very poor understanding of my condition, was telling me to go steady and not do anything unnecessary My first thought was just that I wanted to play but I couldn't because everything was aching. That's my problem you see, when it's this cold, it makes my joints hurt, it makes my muscles hurt, it makes every millimetre of my body hurt.
Mum came to the rescue though, to save me from the insanity of being stuck in the house on my own all day. She walked all the way to my house, helped me get into a multitude of warm layers, collected my medication and walked me back to her house where I was fed bacon sandwiches, given hot coffee to drink and handed my medication. Once the drugs has kicked in, and I was thoroughly warmed through, the mother walked me home and put me safely back in my house. Sanity saved, I was left to chill out. In every sense of the word.
Anyway, digressing from the point somewhat. What's the deal with snow and ehlers danlos? Having an invisible illness means that at times, people forget that you may struggle more with situations. The coldness and danger of snow is one of these situations that a zebra may have to struggle with silently. The news programmes and the papers always remind you to check on the elderly and vulnerable in conditions like this; but they, along with everyone else, forget that there is a whole range of people who may be struggling without anyone knowing.
A small slip can cause a few bruises and a bit of discomfort for a healthy person, but for someone with hypermobility, that can be it. A dislocated joint, a broken bone, even just the shake of the fall can throw us out for days, if not weeks.
So please, with conditions like this, spare a thought for your zebra. Look out for everyone, and just be thoughtful.
Saturday, 12 January 2013
So I made the arrangements and was told I could leave but that I should book in for an appointment at the drs before I left so they knew I was getting it checked out. I did just that and within half hour, I got a call back telling me that they wouldn't help me, that I had to go to A&E.
Off I went home, and then mum got me and took me to the hospital; where after a lot of poking, prodding and pain I was told that I've got to deal with it, that I've just hyperflexed at some point and I need to rest it. All of this could have been done at my drs if they had just read my notes before telling me to go straight to hospital. Instead, I wasted the time of multiple A&E staff, potentially stopping them from treating some one who needed it more than me. For that I feel terrible. Hats off to the doctor that saw me, I said I suffer with Hypermobility and he said "do you mean as in Ehlers Danlos", and he was very knowledgeable about it. Always helps to get lucky enough to get a Dr who understands what they're dealing with.
Anyway, here I am curled up in my zebra onesie feeling sorry for myself and drugged up on diclofenac. This is my weekend I guess.
Thursday, 10 January 2013
Today I received my zebra onesie in the post. I think I'm a little bit in love with it.
It's absolutely perfect for chilling out in, and I think all HMS sufferers need at least one uber comfortable outfit that they can chill in or curl up in and feel terrible in. It should be something that is easy to get into, comfortable and it's a bonus if it's something that makes you smile.
Sunday, 6 January 2013
So where do I go for my support? Well one of my key places is Tumblr; if you search the tag of "Ehlers Danlos Syndrome" you will come across many blogs with the same issue. One of the main ones I follow is here. On this tumblr page there are multiple memes to remind you that you are not alone and there is also Q&As where you can hear from fellow EDS sufferers.
If you're based in the UK, then there's The Hypermobility Syndrome Association. There's also a reasonable amount of information on the NHS website (link here & here).
There is a lot of places you can go to for support, and different counties have various support groups. It is something that is always worth looking into if you feel you can benefit from talking to other people in similar situations to yourself.
There are 2 main reasons for this; one being illustrated by the picture below. In this picture, the red lines symbolise the key areas that pain holds our bodies. As you can probably notice, it almost is a zebra print in itself, hence part of the symbolism.
The second reason is a quote that I just learnt today comes from an old saying in medical teaching to encourage students to think logically; "when you hear hoof beats, think of horses, not zebras". Now this is generally a good rule for the most part. However not for EDS, with all the varying symptoms, it is an incredible hard disease to get a proper diagnosis for as it is frequently mistaken for other problems.
So, when you hear hoof beats, don't just think of horses, think of the zebras too.
Saturday, 5 January 2013
I have been led astray whilst at work into consuming a bacon roll. I blame my manager.
However, I am being good and using the stairs rather than lift; holding in my stomach to help with my abs and generally doing everything I can to be healthier.
Cup 3 of water too.
Maybe it won't be that hard to maintain this and to get healthy.
I also use this video as I want nice legs, and am working on the theory that stronger leg muscles will do me good all round...
This is also partly down to me having had weak leg muscles in the past, causing my right knee to be far more prone to dislocation which is never fun!
This is one of the key videos I have begun to use as the Blogilates channel was recommended to me by my physiotherapist.
I've gone straight to the 10 minute sessions as I am time poor and also have some experience of pilates.
There are beginners videos available on the channel too, which are much better if you are just starting out.
Friday, 4 January 2013
This is me of about 30 minutes ago.
This is me at the beginning of my journey. This is the year I have vowed to gain control of my EDS/HMS (whichever you prefer)
I know I am not fat. I am, however, at the heaviest I have ever been. Some doctors would call it a healthy weight according to their BMI charts. However, my joints are telling; hell, screaming; at me that this is too much for them.
I have vowed to lose a minimum of half a stone (just over 3kg), and no more than 5kg by the end of 2013.
I am also going to get my body into the fittest condition it has ever been, and sadly probably ever will be. Unfortunately this, realistically, is a degenerative disease.
To do this I am doing a routine of physical therapy that has been put together by the NHS for me; doing regular pilate either in classes or using POP Pilates on Youtube; and aiming to go to the gym as often as possible to swim, row and cycle.
Here's to what will hopefully be a happier, healthier 2013.