LIPS Trial – First Infusion:

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I’m sorry this took so long to write, but you’ll see why at the end of this article.

On May 14th, I attended St Thomas’ Hospital in London for the first of my LIPS Trial infusion (to find out more about this, read my previous blog post). I first met the researcher in the pain clinic where we had first met. After a short wait, I was called through and asked to either take off my trousers, or roll up the legs, whichever was easiest. The researcher – Roy – measured up my leg and made a mark with a permanent marker on both legs. Despite Roy’s best efforts, this was painful, but I soldiered through the pain. He then brought in a plastic box full of warm water and placed it on some scales. I was to put my legs in one at a time and he would be able to weigh them. My right (unaffected) leg was 3.5Kg, whilst my left (effected) leg was 0.19g heavier (3.69Kg). Once I had gently dried off, we made our way to the clinical research ward on the fourth floor of the North wing. Once there, we signed in and I was given a plastic tag with my details to wear round my wrist. We moved into the ward and I selected a bed by the window as it was a nice day.

LIPS Trial Infusion 1 - view out of window

My view from my bed

Once comfortable, The team gathered round and the consultant put in my cannula. Fortunately, the cannula didn’t go in my affected area, so it wasn’t painful.

LIPS Trial infusion 1 - canula and forms

My cannula and some questions I had to fill in.

After everything was checked, the drugs arrived:

LIPS Trial infusion 1 - four boxes worth of drugs

Four boxes of the drug- could either be the Immunoglobulin or the placebo.

I was then hooked up to the machine and the drugs started flowing. One of the researchers – Mariana – stayed in the room with me throughout the trial if anything went wrong. The only side effects that was expected was a metallic taste in my mouth. I felt a little light-headed, but no funny taste in my mouth. Mariana checked my blood pressure and then I was left to my own devices for a while, so I opened my book and started to read.

One hour in, Mariana came to check on me and changed the bottle. The amount of drug used is dependent on weight. My bottles weren’t full to the brim, and lasted about an hour per bottle. In the meantime, I went back to my book.

After lunch, Roy returned and started some of the tests. The first was to measure the temperature of the foot in specific areas. He had a template for the area he would test with six holes in it. This was placed on both my right (control) foot and my left (affected) foot and he used an indelible pen to mark six locations on my feet (I still have the marks on my left leg as I can’t clean them off).

LIPS Trial infusion 1 - testing the temperature of the foot

Roy, measuring the temperature of my foot with a thermometer. In the background, the London Consultant.

Although this is a touch thermometer, Roy tried very hard to make it as light as possible so as not to cause too much pain. What’s interesting is that the affected leg was 1.3 degrees C colder than my other foot. This is a well-known fact for CRPS sufferers in that although it feels like your affected area is on fire, it’s stone cold to the touch. You therefore need to keep the area covered to keep it warm, but you can’t bear the pain of something touching it; it’s a catch 22.

Roy then moved on to other tests. The first was using a very light filament which has varying degree of thickness. The bigger the thickness, the more effort it takes (and therefore pressure it exerts) to bend it. Starting with the thinnest (which looked like a fibre optic filament) he started on my good foot in the same positions he measured the temperature, then moved on to my bad foot. There were four tests with these filaments which I could stop at any time if the pain got too much. The last test was using a paint brush in a sweeping motion on the top of my foot. That was the most painful and peaked my pain score at 10.

LIPS Trial infusion 1 - IV Pole

The IV pole with one bottle draining and one ready.

When the last bottle had drained through my cannula, they re-checked my blood pressure and removed the cannula. I was given my next pain diary and allowed to go home. Roy booked me a Taxi which took us back to the station.

The important question:

So, have I noticed any benefit from the infusion yet? I have certainly noticed that my recovery period has reduced. Usually, it would take me 3-4 days to recover from a trip up to London. In this case, I had one day recovery on the Thursday and by the Friday, I was cleaning up under the bed. Does this mean I had the Immunoglobulin? I can’t tell. The placebo drug curiously also has some pain relieving side effects, so I won’t know till I have had all four infusions sometime mid-summer. Am I encouraged? You bet! I have been able to do more things than usual. I can’t climb stairs or walk long distances yet, but a reduction in the recovery period is certainly encouraging, even if that’s the only benefit I get. Had I had this treatment in the first few months of my CRPS, it could well have solved the problem, but we won’t know. All I can say is that if you have CRPS/RSD and can help take part, do. Even if it doesn’t work for you, it could help prove the point to the National Institute for Clinical Excellence (NICE) to allow this treatment on the NHS, which could potentially save someone else from this rotten illness.

I next return to have my last trial infusion in early June, after which I move on to the voluntary ‘open label’ infusions. I will keep you posted about any developments.

Using a Fitbit in a wheelchair:

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Using a Fitbit in a wheelchair

So many to chose from, all with good and bad points.

Being in a wheelchair, exercise isn’t as easy as ‘popping’ to the gym and using the treadmill, or going for a morning run. Because the lives of wheelchair users are more sedentary than the average office worker, who at least walk to the car/toilet/lunch, we have to make a bit more of an effort at it. Or so I thought.

Motivation to track my steps:

In an effort to help my wife in her battle in losing weight, I decided to get us an activity tracker for Christmas. I spent two weeks looking into the different types of devices on the market which included the Fitbit family of devices (Fitbit One, Fitbit Flex, Fitbit Force), the Jawbone Up, and the Withings Pulse.  Each device had advantages and disadvantages. My thoughts of the best suitable trackers for me was:

  • A wrist mounted devices so that I’m less likely to lose it.
  • Be able to track my sleep, steps and calories burnt.
  • Connect with the other fitness apps I use.
  • The ability to connect to my phone to sync data and view stats.

In all my research, I couldn’t find any blog post, article or even forum post on all the fitness forums about the use of an activity tracker, like the ones mentioned above, in a wheelchair. The whole ‘raison d’ étre’ for an activity tracker is to track steps, which obviously not something I do a lot of. I can just about hobble around the flat on a good day, but anything beyond my front door is achieved using a wheelchair or mobility scooter. I sent Fitbit, Jawbone and Withings an email asking if it was any use in me buying a device being that I would be in a wheelchair most of the time. Only Fitbit had the decency to reply. Although written from a heavily marketing point of view, they did say that although the device is designed to be to track steps, it would give a reasonable measure of activity, allowing for a slightly larger margin of error than for walking. They reassured me that they were trying their best to make it as compatible with wheelchair users and would work on getting the margin of error down to a more acceptable level. I’d like to think this series of posts will help and maybe encourage other wheelchair or disabled readers to buy a tracker to stay fit and healthy.

Final decision:

After many hours reading all the reviews, comparisons and walk-through, I decided that as this was going to be a present for both me and my wife, I had to ask for her advice, despite ‘ruining’ the surprise.

We both decided that if we were going to get one, we ought to get the same one for compatibility. There wouldn’t be much point in me getting a different device as we wouldn’t be able to link up and compare stats. Lorna looked through all the devices I suggested, and we decided to get the Fitbit Flex tracker.

Why?

I can almost hear people making comments saying something like “Why don’t you use [xyz] app which will track your steps, and [xyz] to track your sleep?” or “Wouldn’t a pedometer be cheaper?”. Here is my answer to those comments.

The point of using a wristband format and not a clip on at the waist device is simple: I’m very forgetful, and sooner or later, it would end up in the wash. There are plenty of posts on the internet about people who have forgotten to take off their tracker from their trousers/bra/shirt, and it ends up in the wash. 7 times out of 10, the device is unusable, and they need to buy a new one. Pedometers are no more reliable than the wristband. Most cheap ones can be given a shake, and they add ten steps. Plus, when in the wheelchair, pushing myself along, the pedometer or clip on tracker is less likely to pick up the movement, where as being attached to my arm which is pushing the wheels to get around, it records the activity.

With regards to using phone based apps to track my sleep and steps, I’ve tried them. The step based apps usually do ok, as long as the device is in my pocket. But often, when I’m sitting round at home, it’s on the table, or on the sofa or (more often than not) being charged. Something attached to my wrist is always there, just like my watch.
The phone based sleep tracking apps are usually unsatisfactory because they rely on you having the phone placed on the mattress, and it records the vibration and noise. The problem is, I often move round in my sleep, and will knock the phone off the mattress, therefore rendering the stats null. Furthermore, it means that the phone has to be on and charging all night, which makes it hotter and it’s not recommended to have it under the pillow, which would secure it.

Stay tuned…

This is only the first of many posts to do with the Fitbit use in a wheelchair. I urge you, should you come across this in months to come without a recent update, to send me a message or comment asking for an update, and I will do so ASAP.

Next up: My thoughts on the Fitbit dashboard and phone apps

More Writing, More Coding, More… Everything:

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'FF More' photo (c) 2011, FontFont - license: http://creativecommons.org/licenses/by/2.0/

I’ve been lacking a lot lately. Not just at home, but in work, in hobbies and in life. I have my reasons, namely going back to work on a gruelling schedule (for me), good and bad days with CRPS (more on that in another post), and just general laziness. I have found I’m quite capable of sitting in front of TV all day without doing anything. “Nothing new there!” my family would say, but it’s really bugging me. I don’t like waking up in the morning with plans to do XYZ and ending up doing ABC or, even worse, nothing.

Previous attempts:

I have tried not to be stuck in neutral and doing nothing all day, despite my brain screaming at me to do something. I’ve tried to use to-do systems like Get Things Done (GTD) as well as many programs which swear to banish inactivity, but these systems and programs all rely on one thing: Discipline.

Many years ago, when I was about to finish School, my father had a frank discussion with me in which he felt I wouldn’t do well at University, but would gladly support my choice of going or not. When I asked why he didn’t think I would do well, he said that it was totally different from school, in that it was all self-discipline. No one would tell me to go to my room and do my homework, it would be off my own back. Looking back, I can’t thank him enough for giving me that advice, as I do think I would have been too ‘busy’ doing other things (basically excuses to keep me from going to class or doing work) to actually do any university work.

Now, the same problems have resurfaced. As you may remember, last year alone, I wrote two 50,000 word novels. I haven’t looked at them since. Why? Partly because I was letting them simmer, so that when I came back to them, they would be fresh and errors would leap off the page. Every good book, blog or advice about writing tells you to take a break from a long stint of writing, not to go straight into the editing. That doesn’t mean I leave it for a year!

The (hopeful) solution:

I have therefore decided that starting September 2nd, I will start a whole new regime of discipline which should mean more writing, more coding and more time with my family. This involves a whole new filing system, new to-do system and new work ethic.

On my new shift at work I work 4 days out of 9 (call it 5/10 for simplicity). That means that 50% of my time should be taken up with work, and 50% should be taken up with home.

If I split home into four unequal parts, I should take 5% for resting (from work), 15% for family time (which means time with the boys, doing ‘daddy’ things), 10% for coding, 10% for writing and 10% for reading/learning/chores/more resting/anything else. I think this is a pretty good way of splitting my home time with my work time, without compromising my health or any part of my life.

I also intend on using a new routine for my down days (days when I’m not at work) to use my spare time more effectively. As of now, I’ve been having breakfast in front of the TV, watching my favourite show (whatever my favourite show happens to be at that time) and, when I get bored, either moving on to the next thing on my list or, more likely, the next program I can find that grabs my attention. The majority of time I spend coding or writing is usually round bed time, when I seem to have the most energy (ironically) and not fall asleep at the keyboard the minute I open up the laptop.

From now on, I intend on using a more rigorous routine which will allow for a more timetabled schedule throughout the day. I haven’t ironed out the plan, but at the moment, that looks something like:

  • Eating breakfast whilst reading latest articles/blogs etc
  • By 9am, start with writing (blog posts, freelance articles, novels), using the Pomodoro technique of time management to work in 25 minute blocks till lunch
  • Lunch (I don’t tend to have lunch on my own at home), reading any new articles/catching up on twitter/emails/phone calls.
  • By 1pm, start work again, this time on coding (at the moment, still learning), still using the Pomodoro technique till the boys come home.
  • Spend time with the boys, engage with them, play with them etc.
  • Spend time with Lorna once she comes home, making her tea/coffee and letting her recover from work (she lets me do the same when I work, so it’s only fair).
  • Bed, at a reasonable hour, not 3am (which is often the case at the moment).

Why the ‘Family Time’ Block?

I have been asked, or can imagine it being asked, why I need to divide time to spend with the boys/wife, surely this is an obvious part of being a family man? Yes, of course it’s an obvious part of being a parent and husband, but I have to admit, I’ve been dropping the ball lately on that, not spending time with the boys when here, or being on the compute all night instead of spending time with Lorna. It’s not because I’m being antisocial or because I don’t want to spend time with my family, it’s because I’m generally playing catch up to all my other commitments. Being a part-time worker, part-time freelancer, I have a great gift of time (the 5/10 days) to spend on my hobby/business of freelancing. Most starting freelancers don’t have that luxury. I now need to use this time effectively. Doing so will mean I’m not furiously trying to type up an article whilst looking after the boys, or half-heartedly trying to learn HTML whilst ‘spending time’ with Lorna.

Seeing as this post has gone on longer than I’d planned, I will outline what tools I intend on helping me to carry out this feat of remodelling behaviour. This will be released tomorrow, so don’t forget to come back and read the follow-up.

To a Real Life Hero

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Today is a very special day for several reasons.

  • It’s six days till I return to work
  • It’s Joe’s Ninth birthday, and
  • It’s Lorna and my Eighth wedding anniversary

I mention all this because on this day, I want to pay special tribute, publicly, to a real life hero of mine.
If you know me, you’ll know that I love comic book heroes, in particular Batman for his unwavering pursuit of justice and doing the right thing, even if it’s wrong whilst all along respecting the sanctity of life. My favourite comic publishers, DC Comics (home of Batman, Superman and Green Lantern to name a few) are currently running a competition to find real heroes. The premiss is that you nominate your own hero by posting a short video stating why you think your champion should win. People vote, and the video with the most votes wins. I was going to enter until I read that the competition was only open to US citizens (not for the prizes, but to show my deep appreciation for my hero) . So instead, I thought I would show my appreciation like this.

Whilst my hero doesn’t stalk rooftops in a cape and cowl, or smash their fist into people’s face till they gets what they want, they do stand up for freedom, independence and justice. “Who is this wonderous paragon?”, you may ask. It is quite simply my beautiful wife, Lorna.

Since I become disabled with CRPS, Lorna has taken up the slack I have gradually let slip more and more in all areas in our family. She runs this unit as best she can with three dependants begging for her attention. She does all the housework (don’t let her fool you into believing she loves it), the shopping, the cleaning, the mending, the cooking, the bathing, the first aid, the refereeing between her two boys and me, the money management and the moral supporting whilst holding down a day job and making it look like she does nothing. There are times that I have to remember that she is running this family, not me, as I often think I am.

Some will say that all the above is ‘her job’ as wife and mother which, while not the description I would use, maybe true, but what she does on top of all this is care for me and Ashley. Although our little three-year old is growing and slowly becoming more and more independent, I am going the other way. Lorna has had to lift me off the toilet when my legs have decided to give up, out of the bath or off the floor when I have fainted and made sure I have a never-ending supply of tablets to control my CRPS. She has phoned me on a daily basis to make sure I am ok and to keep me company, she has been a shoulder to cry on and a voice of reason in my (many) darker moments. She has even paid through the nose (along with thousands of pounds from her parents) to make sure that my life is as comfortable as possible. We have bought an ever-increasing amount of mobility aids from walking sticks (singular, then plural), walking frames, wheelchairs, mobility scooter, perching stools, bath boards, softer clothes, comfier chairs and beds, numerous smaller aids and two cars big and soft enough to allow me to have a more comfortable life.

Not only has she done all this without uttering a single word of complaint, but she has done it all whilst battling her own health problems. Even when she has felt low, ill and just wanted to curl up in bed, she has made sure that both the boys and I were comfortable and content first. She has continued to be a mother, wife, lover, listener, confidante, carer, driver, Physio, butler, maid and cook.

These list of accomplishments and gushing praise pales in comparison to what Lorna has done for me, and I know I will, sadly, never be able to thank her or repay her enough for what she has done. So let me say now, publicly, with readers as my witnesses, that I love my wife, and declare her my ultimate real life hero.

Thank you Lorna, from the bottom of my heart. You have done for me more than you can imagine and I can only hope that your reward will be countless, if not in this life, then the next, and many more after.

Why there is no “Try harder” anymore

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Several things today have given me a mini realisation, and I thought I’d share it here.

The first was this morning, trying to get my boys ready to go to school/playgroup. I was trying to get my 3 year old, Ashley, ready by putting his shoes on. In an effort to get himself sufficient, I was asking him to get them on. He just sat in front of the TV, moaning that he couldn’t. The fact that he was still watching the TV and hadn’t undone the velcro strap appears to have escaped him.
I turned the TV off in an effort to get his attention fully focused on the task of getting his shoes on. He didn’t like that, but tough. I asked him to look at what he was doing and encouraged him to undo the strap. Even that was a chore, but he managed. I continued to coax him into doing it all himself, but his temper got the best of him and in a hissy fit, he kicked his shoe off.
*sigh* Back to square one.
We eventually managed to get the first shoe on. Then I asked him to do the next shoe. “I can’t!” was the simple answer. Again, the fact he hadn’t tried and had just got his first shoe on seemed to escape him. After some more, gentle, coaxing, the second shoe was on. With a sigh of relief from both my Father in Law and I, we tried the coat next. Again, another task, but apparently easier than the shoes.

What I had failed to see here was that he was tired (from getting up in the night), not a morning person, and wanting things done for him. There was also something else that escaped my attention till now.

Later that morning, I was speaking to my niece on Facebook messenger. She has been going through some very tough times health wise recently, but has the kind of soul who is more concerned about others and therefore was catching up with me. We chatted about the difficulties she’d been having recently and how she felt she was letting people down by not trying hard enough. By this point, I had moved into the bedroom and was thinking about getting dressed. When I saw this comment, I immediately started, like any good uncle, to disagree and say she wasn’t letting anyone down till she quit.

And that’s when it hit me:

There I was, still sitting in my pyjama’s, working up the courage to put clothes on. This is a battle I face everyday. Sometimes, I’ll stay in pyjama’s because the thought of taking them off then putting clothes back on is too much to bear. This isn’t simply a matter of trying harder, it’s a matter of deciding if I want to live with the pain after I have got dressed, or save my energy to do the washing up, like my wife asked. To someone without CRPS/RSD, this sounds silly. But I know this will resonate with my friends who read this. And this is why disabled are often labelled as lazy. It’s a matter of context. It’s like standing at the bottom of a sheer cliff with the other person is at the top. To the second person, there is no cliff, they are standing next to you.

So how does this relate back to my niece? Well, the fact that she is trying to get better, rather than just letting it take over her life, is a massive step. Bigger than people take for granted. They say that admitting you have a problem (what ever that may be), is often the first step towards recovery. This is true, but what the don’t say is that the hardest step is to actually try and change. To many, getting dressed is a task that takes minutes (once they know what they want to wear, of course). For me, it’s a task that can take anywhere between ten to twenty minutes, depending on my pain and energy levels, even with my wife’s help. Even when energy is high and pain is low (AKA a good day), by the time I’ve finished, the levels have often swapped, and I need to rest to face doing anything else. It’s not a ‘simple’ matter of trying harder to get dressed, but real battle between keeping these levels in optimum balance. The same is true for my Niece. It’s not a ‘simple’ matter of trying harder to get better, because trying is the hardest thing. Same with Ashley; I need to remember that, for him, putting on his shoes is difficult. It’s not a case of simply trying harder, it’s a genuine struggle for him to co-ordinate his hands and do it without becoming frustrated and giving up. We need to remind ourselves that everything we accomplish, when the trying is too daunting, is a massive tick in the win column.

The same is true for people who don’t have a disability or fighting health issues. For example, I love writing, but often don’t feel up to it (mainly due to CRPS, but equally due to laziness). So when I make the effort to open my laptop and start tapping away at my keys, that’s a massive win. Going for a jog is good for you, we all know that. But when you look outside and see it tip down with rain/snow or blowing a gale, it’s much easier to turn over and stay in the nice warm bed. Actually getting up, strapping on your running shoes and going out for a run is a massive win.

So remember, the fact that you’ve started to climb that cliff, rather than turn around in defeat, is something to be proud of, and something the person at the top of the cliff won’t be able to see till you explain it to them. They still may not be able to see the cliff, but they’ll understand why you’re so daunted about climbing it. There is no try harder, because the hardest thing is trying.

Just for the record, I asked my Niece if I could write this and was given the green light. So I dedicate this to all climbers, and especially to my Niece, Rebecca Ross. May you keep climbing sweetie, and race you to the top!

New Year Update (at last)

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Hello, it’s been a while. I have no excuse for this really, but I’m going to make up a load in this post. Feel free to choose any one you feel most appropriate.

My last post was at the begging of NaNoWriMo in November. Well, I ploughed on with it and managed to finish with two days spare at 50, 000 words. It was nowhere as easy to finish that August because I ran out of plot with 15000 words to go. I managed to get past it, however, by writing bits from earlier on in the story, and even making an alternate ending (one which will likely never be used, but it’s there all the same). Once my own Macbook Air arrived, I was able to happily plough along and demolish the word count. On some days, I managed to write over 4000 words!
Not only did I have a good time writing in November, but I also got more involved in the local NaNoWriMo scene. There wasn’t really one in August, the site and forums were pretty dead. But midway through October, they woke up, and by November 1 st., they were posting on there every day. I went to local write in’s at the library and coffee shops and met new people who were also writing. 

For December, I was still trying to get back to work (which I’m still trying to do) but was fortunately kept busy by creating and publishing a website for the writing group I attend. Within a week, I had a pretty decent website up and running with its own domain name and managed to get it up to 5th result on Google under Basildon Writers. Check it out, at www.basildon-writers.com. If you are a local, don’t be afraid to join us.
The hardest part of December was attending another Tribunal for my DLA appeal I had lodged over 18 months previously. I arrived in my wheelchair, tired, sweating and very woozy from passing out in town only an hour earlier to be told that the original decision to give me DLA was “Clearly an oversight, and should never have happened in the first place”. It was obvious from then on that no matter what I said, I would be awarded nothing. Sure enough, several days later, the letter arrived telling me that they had ruled in favour of the DWP and no more would/could be done. We are going to make a new application outlining all my current problems, but I am not holding my breath. Not when the government are still waging a war against the disabled as if we were tics on society. It’s getting to the point where I can sympathise with the blacks back in the 50’s and before, where they were treated like a separate species and segregated from society.
The end of December was mainly taken up by the usual festive period, but I was also madly typing away at the keyboard to polish up two stories I was going to enter into a competition by the end of the year.

The New Year started off quietly and other than publishing a couple of posts for Pocket Droid, I didn’t do much. I did, however, get some really good feedback from one of my competition entries. I received 36 points out of 45. I feel this is an achievement in itself. The comments that went with it were just as flattering. One of the compliments about my presentation (how it was set out) was:

A professional and workmanlike presentation which would command the respect of a publisher or agent.

This was one of my biggest fears, so to receive such a comment is great. But what really bolstered my confidence was the final concluding comment:

You have an impressive gift for fiction writing and your work shows great competence. Merely address a few points of detail and you will be well placed to win a worthwhile award next time.

This kind of encouragement is exactly what I needed to push forward and keep trying to win competitions and publish my books, so keep tuned.

“Clouded by the dark side his mind is” (or was)

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If you follow me on Twitter, Facebook or at work, you will know I have been very low for the last week. The main reason for this is a major flare in my leg effected by CRPS. I was sent home from work near the beginning of September and took about 10 days off work due to major spasms and burning in my leg. I managed to return (much to my delight) last Saturday. I survived two morning shifts and half a late and was sent home again for (and I quote) “Sounding like crap and looking like death warmed up”. Sadly, this didn’t do much for my mental state, as it felt like I was letting everyone down and failing miserably at being a provider for my family. I was followed home by one of my supervisors and just cried all the way home.
The next day, I went to see my GP (again) who cave me increased doses of my meds and told me to take a month off work for depression and to get used to the tablets. So I know have the rest of October to cheer up, get used to the tablets and rest. Something which, sadly, is not easily done.
Being a husband and father of two is hard enough. But when you have a debilitating pain condition like CRPS, then doing all those ‘normal’ husband/father things are made a lot harder. I can’t run after my boys and play on the floor with them (although I sometimes do). I can’t just vacuum the apartment, do the washing up then put a wash on. All this causes me extreme pain. Getting out of bed in the morning is painful. Putting on a sock is excruciating, although if I don’t my feet freeze. Walking round the flat requires me to use one stick (two if I’m bad) which means getting a cup of tea is difficult.

-“Can’t you just take more pain meds?” People will (and have) ask.
If it was that simple, it wouldn’t be a disability. If it was just a matter of taking a couple of tablets a day, then sure I could cope. But I do take an increasing amount of tablets which only just allow me to cope with everyday life. If you know me, you’ll know I’m usually quite a bouncy, upbeat guy (or at least, try to be). When you are getting bombarded by pain signals all the time not only your leg, but also your hips (because of your funny gait), your hands (I suspect because of encroaching arthritis) and back (due to having to find odd positions to sleep in), it get’s difficult to deal with day to day things.

What I’m saying is that we all go through peaks and troughs. We need to celebrate the peaks, and fight through the troughs. This is best and easiest done with a good support network. I am VERY fortunate to have a great support network. I may not make the best use of them (by talking and sharing my struggle), but please know this is not a slight on you, it’s because I close in on myself. Knowing that you are all there for me when I’m ready to talk is great encouragement to remember the peaks and climb out of the troughs. I may have said some very silly things in that trough, and if I worried or scared you, I apologise. I have a bit more sense than to do those things, but I know hearing them isn’t nice.

So thank you, you all helped me climb out of my trough and proceed to my next peak. I will return the favour if you are ever in need.