&*^%$£%

Just when I thought I was getting some respite from the arthritis, as usual, its come back to bite me squarely in the arse! Its that situation where its easier to work out where it doesn't hurt, compared to where it does! And so for now, just about everything is sore...... and has been for several days. This means as well as the slow release tramadol, I've had to hit the regular tramadol. Okay - except it makes me sleepy as hell. To be truthful, the slow release does, but at least I can function on some level. So I've spent a few days just trying to clear the fog in the brain, and that isn't without the fatigue this damn disease causes.


No, I'm not having a very good time of it lately. I know it'll pass, it always does but in the meantime I'm one crabby bunny!

Let me rephrase this.....

Let me rephrase this........


So I say to you:
Weekly I have to take medication that is used in some cancer treatments.
What is your immediate reaction? 


Now, lets say it a completely different way.

I say to you, I have arthritis. What is your immediate reaction?

I bet it is nowhere near the same level as the first comment.

So,  what has changed?


In reality, nothing has changed. I have a form of inflammatory arthritis so severe, that one method of weekly treatment is also used in some leukaemia treatments. It will remain that way until either my body reacts to the toxic levels it produces, or it stops working. This usually happens, most patients do begin to suffer either with the treatments becoming ineffective over time, or extreme reactions to the medicines themselves because they are so strong and we have to hope we can swap to yet more toxic medicines.
And yet, it isn't something most people even realize, but they can immediately sympathize with cancer treatments.


We have to educate this. Its one reason I'm writing this all down. If just one person reads it and they change their perceptions, I'll be happy.

So, its that time of the month

So, it's that time of the month.......


Now, if you're in the slightest bit offended or squeamish about certain female things, don't read any further. Not that I'm going to go in to any real details, but I know some people don't like discussing "women problems".


The reason for this today is simple. I've had excellent specialists in the time since my diagnosis, and yet, one thing that I know has been discussed amongst the woman with RA *or general inflammatory arthritis* is when your period is due. I didn't notice it to begin with, but I suddenly became aware that just before I was due to menstruate, my arthritis some days before (it can vary between 2 and 5 days ahead) goes on the rampage, and ramps itself right up. I'm not alone with this, and yet when I've mentioned it to my specialist, they don't appear to find it important or relevant. I've also not read anything in any literature about this being a possible problem or symptom - although there might well be some out there, I've just never seen it.


I find this strange, simply because if I had known about it before hand, I could ensure I took precautions to help lessen its impact when it does occur. I can set my watch by my cycle, so I can also now predict when I'm going to get hit by the arthritis, and this helps me enormously, because I can sit and plan in advance. Not something you can often say with this disease. But now, I know when to try and rest, and not have too much marked in on the calendar. It doesn't mean I stop life altogether, but I can plan around what I know is coming, and therefore actually get more from those days than if I didn't have warning. So I have to ask why isn't this something that is studied more by the specialists? Its not just a co-incidence a lot of women are like me, and yet still, unless we discuss it among ourselves online, we most likely would never have made the connection. This also seems to show that hormonal changes can have a massive impact on how the disease manifests itself. 


So come on medical profession, please begin to actually listen to your patients and look in to this more, or at the very least, give warning in literature to people that there is a high chance this could happen to them if a woman. 

Pain in the..... everywhere?

Pain in the....... everywhere?


If you have RA, you know where I am going with this one. The constant pain we live in day to day. You kinda get used to the background pain that never leaves your body. At least, I have..... but its always there, always nagging away at you, never quite letting you forget.
Pain in itself is something I've always been pretty good at dealing with. I know that over the years, because I've tended to have pretty physical jobs, which regularly meant I got hurt - I've also had expressed disbelieve from the doctors or nurses when I've finally given in and gone for treatment. I'm lucky like that I guess, unlike J, my civil partner who can and has passed out when having injections because it hurt. Even just the other day, I was seeing my doctor to organize some steroid injections for my shoulders, and she remarked that, because of all my other blood tests etc, I was going to be seeing a lot of needles over the coming weeks. I shrugged it off - I have no qualms about that sort of thing. 


Yet, I struggle with this damn RA pain. I use a specific proven meditation technique (based on Buddhist mediation) and it helps, but even I have to succumb and take slow release tramadol. This helps, but even so, I occasionally take a hiatus from it, for a number of reasons. Not least, I'm already throwing a lot of toxic chemicals in to my system, and I like to give it a chance to avoid one more as long as I can. It also means I don't become to reliant on the drug, and finally, I don't become immune to the dosage and it begins to lose effect. But, by doing that, I'm allowing even the base level pain to come and bite me well and truly on the ass. But that's okay, my decision, I'll deal with it.


The problem arises when I have not just a flare up (where joints swell up and become painful), but as the redness and swelling subside, it takes days for my body to get back in kilter. Worse still if I get a succession of flare ups over hours, not just days. This takes pain on to a whole new level, and quite frankly it is simply impossible to describe. Take a baseball bat and get someone to swing at every joint you can think of. I don't just mean hands and feet here in general, but I'm posting pictures to show just how many joints these have. Now, put the pain in just about each and every joint you see on the pictures - and its in both hands and feet remember, not just one, although occasionally if you're lucky, it might just be one sided.
This is as close as I can describe it. It is truly excruciating, and there is no relief, just pain. It masks everything else you are feeling. You hurt sitting, standing, lying down. Everything feels amplified. 


This is what most people with RA deal with, day in, day out. We might not show it, in fact, listening to other RA patients, we all seem to hide it as much as possible, including our own doctors, but its there. Always there.
So, if you know someone who has RA and seems quiet and withdrawn, don't take it personally, its most likely they are struggling. Whether in pain or some other part of this multifaceted disease. 

How many more times!

How many more times!


Now, I'm a pretty patient person for the most part. It takes a fair bit for someone to push my buttons - I have my father to thank for that, since I take after him, and not my mother, who my sister is like.

But - I find it so difficult to not get mad when someone asks about my disease, and I say "I have rheumatoid arthritis." to then get the reply, "Oh, I've got arthritis in...." and they proceed to talk about osteoarthritis they have.
Don't get me wrong, I know osteoarthritis can be debilitating in its own way and painful. Believe me, I also have osteoarthritis - so I know how that can be.

But you try and explain that your disease is nothing like, and you can see the shutters rolling down across the eyes before you've even got as far as "But......." 
Now, for those who don't like swearing, stop reading now.........


For fucks sake - at least have the decency to listen! It isn't a fucking great competition to see who has the worse disease. Believe me when I say I'd give mine away in a heartbeat.
I see when someone has MS, Parkinsons, Huntingtons, Cancer and other diseases to name just a few. People recognize and understand the difficulties often faced by someone with those disorders. And yet, RA remains such a mystery to most. I've had personal experience with friends and family who had all of the above - My own family in particular has faced Parkinsons on three occasions. One grandmother, my uncle, and his brother - my father - who died last year from complications partly due to his Parkinsons.

Personally, I would rather RA was given a name that completely removed its association with arthritis, at least for the public conception. Its first and foremost an auto immune disease. It means my body is, for whatever reason, attacking itself. This isn't just limited to joints.

Perhaps the only way we can fully educate is to get rid of the misconception, and the first step would be, at least I believe, to remove a name that automatically gives that. No, I have no real idea what to call it, but I'm sure there would be enough of us to throw some ideas in to the ring, brain storm it, and come out with something far better than we have now.

So how was your day?

So, how was your day?


I only ask the question because most people simply cannot imagine how something like RA (or indeed, other inflammatory arthritis conditions) cause so much disruption to a person. I'm not talking about the pain levels (that's a completely different story), but the day to day stuff we all take for granted.

When I was first diagnosed I have to admit it was a relief. I knew something was wrong, and had been fighting some doctors for years, who despite seeing some inflammation levels in my bloods, just put it down to effectively being in my mind on my part. I then moved, and the new doctor listened, only the second GP who actually did that. The first, was excellent, don't get me wrong, and also fully agreed I had a problem. But she couldn't get a specialist to make a decision. Not fully. So I was feeling nervous when I was booked in to see a new specialist in a completely different area.
I could hardly believe when they said almost without thought, "You have inflammatory arthritis of some kind. We'll begin treatment straight away." So, here I was, finally, with something concrete.
But, and despite all my medications, I have a disease that is unlikely to ever go away (unless treatments do enough to manage that). It means each waking minute is now spent having to listen to my body, so I know what I can and can't do.


Quite simply, once I was aware of my condition, my world entered a tailspin (and as someone who launched Gliders for a living *Sailplanes for those of you in the US* I know how disorientating a tailspin is). It wasn't a good time for me. Its the biggest things that you begin to lose first. I can no longer pick up my acoustic guitar and play. I can no longer walk the dogs across 4 to 6 miles of hillside every day. I can no longer sit and read a book for long, as holding one is too painful. I can no longer sit at the computer for long as I try to enjoy the web and graphic design stuff I've done for fun. I can no longer hold an SLR camera (digital or otherwise) to take photographs. I can no longer use a chainsaw, strip down an engine and rebuild it, plaster a wall - to name just some of what I've lost.


Then you begin to notice the smaller things being lost. Struggling to pop some pills out of a packet. Struggling to get in and out of a bath. Struggling to even change gear in the car. Struggling to just lie in a comfortable position in bed, feeling as if your on concrete. Holding a mug of coffee can become a challenge (I always ask for a takeaway cup if at a coffee shop because I can grasp that easier than a handle). I even have to think about the sun before I go outside, as my med's make my skin more prone to burning. Each minute, each action has to be thought about.


And then there is the "I'm going to sneak up behind you and surprise you." little shit of a loss. I often find these the worse, because they quite literally come out of nowhere, whereas the other losses, you notice gradually over time. But the sneaky bastards that come without warning - they are tough to deal with. It can be just about anything that triggers this sort. From bending to put a sock on, which you could do a minute ago, but you're not able to put a second sock on, as fingers seize up and from that day onwards, you're fingers refuse steadfastly to not work well enough to pull a sock on. So I either go without, or get J to do it. 


As with all my posts, I'm never looking for sympathy. Sure, its nice when people are sympathetic, but more than anything I want people to try and understand this disease. So, it you know anyone who becomes a victim to Inflammatory arthritis (or any other auto immune disease), just remember, your idea of what a sick or even what a healthy person should be like is often not the reality. So, ask questions by all means, but don't judge. Listen.

I'm sick of being sick.

I’m sick…..

I live in the UK and .......

I’m sick of being sick.

I’m sick of all the headlines that are cropping up almost daily about sickness and disability.

I’m sick of having to defend myself to people who haven’t got a clue, and don’t even want to listen, who have made their mind up – that "people who are sick are scroungers."

I’m sick of the indifference of supposedly intelligent people.

But most of all, I’m sick of people who have no empathy whatsoever.

Once again, we’ve had headlines designed to shock people, make them believe that benefit fraud is rife, and worse still, they have made fun of it.

Well, for those of us being caught up in the crossfire, with genuine illness and disability, it is far from “fun”.

The government has spouted spin that is quite frankly absolute bullshit. And yet, when I see others trying to get this rectified via the same media who have put out the information – I see nothing to dispel the headlines – because headlines sell papers. Who cares about the truth!? Not many people it seems.

And yet, everyone should be worried about what is happening. I didn’t ask to become ill. I have worked in my lifetime. In that respect I was lucky, because my illness didn’t stop me working for some years. But equally, there are those who are struck down at a young age and can never fully enter the workforce. Yet – it seems to be considered, if you’ve never worked, you’re a scrounger. Even, if like me, you’ve worked, people still eye you with suspicion and you know many are questioning your true entitlement.

But, as mentioned, we should all be worried about this because illness and disability can strike anyone – at any time. One day, you can be healthy living life to the full. The next, struck down and your world enters a tailspin.

When that happens, we’ve had a safety net in the benefits system. But today, the government seem to be using the weakest of us in society to hit with reforms that are dramatic and draconian in nature. But the most vulnerable will be safe they say….. Whereas the reality is far different, and few seem to be asking, “what about the significantly disabled and ill – not just the most severe?” We all have different levels of disability. It isn’t a one size fits all – and the current DLA allows for that flexibility.

But the government is about to remove that and make it a one size fits all – and use the “simplifying the system” mantra as the reason for it happening. However, it will mean a huge number of significantly vulnerable people will be left to fend for themselves, in any way they can – and that in turn will lead to greater poverty, and in some cases, homelessness. In fact, there are increasing numbers of stories that this is already happening. It also means amounts of help given is going to drop to a lower rate.

Not only are the people with significant disability going to lose out, the government again are trotting out figures that are simply exaggerated!

Now, many of us know that there are benefit scroungers out there, in all walks of life. And the worse of those are rightly prosecuted to the fullest extent of the law and I hear people cry “I know of someone who is cheating the system”…… okay – so do what I would do – report them, don’t moan about them. You also have to remember the ”big” headline cases are a tiny drop in the disability ocean. DLA fraud is low (between 0.5 and 1% are the official figures). Its also the one benefit that is the hardest to get, with really strict medicals to face. You do have to jump through numerous hoops - it isn't just given without a lot of effort, and notes from your doctors and specialists.

Funny how those facts and figures don’t get given out when the government wants to make a point about people’s entitlements.

We also have to remember, that DLA is a non-means tested benefit. It means that many people use it to keep in employment, but getting mobility component for example. It means they are still able to pay back in to the system. If that support were withdrawn – they would end up costing the state more! How is that going to help anyone?

Yes - I have a mobility car. I pay for it! It comes out of my benefit – a bloody big chunk of it as well…… I pay towards its insurance, upkeep and running – but I use an organisation to take away the hassle of having to do it all myself. I like being able to do that, especially when I have to plan even a task like making some phone calls……. Because of my illness. I have to plan every single second of my life these days, weighing up what I can and can’t do on any particular day. And yet, people don’t see that side of my life. By taking the decision to do it this way, its one less thing I have to worry about.

When asked, I say, “I’m fine.” But I’m never truly fine. I no longer have a life as you might know it……… but for a start, people don’t want to keep hearing about how bad my illness is today – hell, I would end up wanting to slit my own wrists if I kept saying it to people. Instead – I try to make the best of what I have got – and hope that people just see me with a smile on my face, and not the reality – because I know people don’t want to see that reality. Not really.

We have a great wide screen TV on our wall these days. – But it was a present. Up until then, our TV was 10 years old. Our computers are old, and we keep upgrading as we can, praying that they keep going as long as possible. We don’t drink, don’t smoke, and we’re lucky we have family in Cornwall, which means we can have a “holiday” once a year. If we couldn’t stay with family, the “holiday” simply wouldn’t happen, not just because of the financial constraints, but also because of my illness and disability, I need to have space and time to collapse and recoup energy. It means, even on holiday, I have to plan every single second of the day. My life is spent constantly planning these days. When to take my tablets, when to rest, when to try and flex my joints, when to use the ice packs, when to use the heat pack and each day, hell, each hour means it is never quite the same problem I face…… all of this and more is now what I have to think about. Let alone when my disease decides to hit the ground running without warning. That is when I’m guaranteed to cry, and yet people don't see that side (well except J, my civil partner).

I don’t write this because I want sympathy. I write this because I want people to understand – that many benefit recipients didn’t ask for this, and that god forbid, anyone could be in my shoes in years to come. If we don’t stand up and protect what little we have now, you might just find there will be nothing for you if the worse were to happen.

If I had a choice, I would be working today – without hesitation. I was far better off financially – I had employment options – I could choose what I wanted to do, and even if it wasn’t my “ideal” job, I knew I could keep looking until something better suited came along. I can no longer do that. It is yet another example of how my disease has taken a chunk of my life and tossed it aside. It took me a long time to accept that my life as I knew it was no longer. Now I fear that any life I have now is going to be taken and I have no idea what I will do if that happens – because I have no alternative, I have no other choice........ Neither do many others.

One day – I wish people could walk (or in my case, hobble) in my shoes for just one day. I sense that is the only way people can fully understand what disease and disability can do to your life.

But most of all, I wish people would have more empathy. It seems sadly lacking in todays society.