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.

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A Day In My Life Photo Challenge for 30 Days of CRPS/RSD Awareness

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Day 1 – Introduce yourself:

My name is Dominic Ross, I’m 29 and have #CRPS/#RSD in my left leg for four years this Christmas.
I’m married to Lorna Ross and we both have two boys, Joe (9) and Ashley (4). You can follow me on Twitter as @youngdad33 or follow my blog at http://www.fightingeveryday.wordpress.com

For the month of November, I will be posting daily photos to raise awareness of CRPS/RSD. There is a big group dedicated to this on Facebook which is open to join under the same name as the post title.

If you don’t know what CRPS or RSD is (it has two names because there are two types and the USA uses RSD whilst Europe uses CRPS), feel free to ask me any questions via the comments field or follow this link to the Wikipedia page which will explain it.

If you know anyone in the medical or caring profession, I would ask that you pass this on to them, as many people (including general practisioners and nurses) have never heard of CRPS.
If you are a fellow fighter/sufferer, feel free to follow me on twitter were I am very active chatting on a daily basis with other fellow sufferers. A good support network is essential to dealing with this curse.

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A Day In My Life Photo Challenge for 30 Days of CRPS/RSD Awareness

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Day 1 – Introduce yourself:

My name is Dominic Ross, I’m 29 and have #CRPS/#RSD in my left leg for four years this Christmas.
I’m married to Lorna Ross and we both have two boys, Joe (9) and Ashley (4). You can follow me on Twitter as @youngdad33 or follow my blog at http://www.fightingeveryday.wordpress.com

For the month of November, I will be posting daily photos to raise awareness of CRPS/RSD. There is a big group dedicated to this on Facebook which is open to join under the same name as the post title.

If you don’t know what CRPS or RSD is (it has two names because there are two types and the USA uses RSD whilst Europe uses CRPS), feel free to ask me any questions via the comments field or follow this link to the Wikipedia page which will explain it.

If you know anyone in the medical or caring profession, I would ask that you pass this on to them, as many people (including general practisioners and nurses) have never heard of CRPS.
If you are a fellow fighter/sufferer, feel free to follow me on twitter were I am very active chatting on a daily basis with other fellow sufferers. A good support network is essential to dealing with this curse.

Update and the future

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To say it has been a busy and emotional couple of months would be underestimating it. It was five to one in the morning when I started writing this. I was tired and in pain and my brain wouldn’t shut up about all the great ideas I have in my head.

Writing:
Unsurprisingly, the majority of my ideas in my head are about writing. I’ve been very lapse recently on the writing front. Actually, that’s a bit unfair. I’ve been writing plenty, but none of it is to do with my novels (yes, plural). On the upside, it has all been to do with my freelancing business which, although I’m not getting paid for any of it (I guess you could say I’ve been putting the free into freelancing too literally), is giving me great experience which is almost as good as money. When I come to tout my services out there and bidding for jobs, I’ll not only have the last year’s experience behind me, but the massive catalogue of samples to refer people to, not to mention some previous employers only too happy to give a reference. I was very lucky to be chosen to report on the games of the British Baseball Federation’s Single – A league. Single-A is the lowest grade of league for adult baseball. It combines my passion for baseball with my passion for writing. My second freelance job is writing reviews for the PocketDroid website. We have been upping our game a bit recently, being sent items to review.
My creative writing hasn’t been totally laying to rest, however. Thanks to the ever helpful and relentlessly supportive people at the Basildon Writers Group, I have managed to pen a couple of good short stories, which have now been entered into a competition for the Fiction Desk’s ghost story competition. I should hear in the next couple of months how I got on with that.

Work:
In my last post, I said I was a week away from returning to work. That has gone well, but it has been far from easy. Previously, when I’ve returned to work, I always felt that the recuperation shifts (several weeks of working shorter hours and slowly building them up) were a waste of time. This time,  I have found it much more difficult to keep up. Even working part-time hours of one day on, one day off has been challenging. It is clearly getting to the point where going to work won’t be a possibility, and that is something I’m not sure I could handle. Being the stubborn chap that I am, I won’t give up so quietly, but I have partially accepted there will be a time when I will have to consider myself retired.
I recently saw the Force Medical Officer (a Doctor who works for my employer) who suggested outright that if I don’t work from home, there will be a time when my employer will have no choice but to let me go. I am very grateful that it hasn’t happened already, and couldn’t ask for a more understanding employer, But I also accept that they have a business to run, and need people they can rely on, not ghosts on their staff sheets. As a result, the FMO says that if he can’t get work to give me a home job (which would be monotonous beyond belief) then he would have little option left than to medically retire me on grounds of disability. He says at least that way, I will have less problems with benefits (if I’ve been medically retired from a job, they’ll find it harder to MAKE me get a new one. I’m sure they’ll try, but it would be harder for them).

Disability/CRPS:

My CRPS hasn’t been pulling any punches recently, which is mainly why I was off work for so long. After the disaster that was my Disability Living Allowance tribunal last year, we re-applied on a brand new case. We made it clear that I was vulnerable to falls, dizzy spells, tiring quickly, extreme pain and needed help just to get up from the toilet most of the time. Yet they still wanted more evidence, so they wrote off to my doctors and consultants. If that wasn’t enough, they sent an independent Dr round to assess me.
For our first meeting, I was meant to see him. Unfortunately, I didn’t get the appointment letter till a week after the appointment was due. Then, a couple of weeks ago, I got a phone call from a foreign man saying he needed to speak to me. I very nearly put the phone down thinking it was a spam call, but it was the independent Dr who said he was due to come see me today. Advanced warning would have been nice! I was having a bad pain day and had the beginnings of a migraine coming on, so figured I would look like crap and told him to come along. It turns out they had been sending all the letters to a flat upstairs which has been empty for several months. Still, the assessment went as well as it could, I think, and now have to play the waiting game to see what the final ‘decision Maker’, a person who reads all the documents, doctors reports and application forms, has no medical training what so ever and is told to stamp the letter with approved or denied. It will be interesting to see what they decide…

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!

Good appointment at the PMC

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I had my first meeting with my pain consultant since January today. I went in with an attitude that if he didn’t help, I would be angry and demand that something be done about my pain. Fortunately, he was very pro and has referred me for an IV of Guanethidine. It doesn’t sound pleasant, as they have to put a tourniquet on my thigh, then insert the IV into my bad foot whilst the IV is injected (about 20 minutes). The tourniquet is then released and the drugs circulate the body.

It sounds like it will hurt, but at this stage, the pain has got to the point where I’m willing to try anything, even if it will hurt to start with.