&*^%$£%

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.

RA - I hate the misconceptions

Rheumatoid Arthritis (or a type of inflammatory arthritis) - Facts, fiction and general comment.

I've been writing this note for a little while, mainly because of the various posts and discussions I've either had or seen online to do with Rheumatoid arthritis (although much of this can be applied to all types of inflammatory arthritis). 

So many of us seem to have many similar problems, not just with people around us, but in some instances with people who are supposedly medically qualified, and yet have either shown complete lack of knowledge, or arrogance, or in the worst cases - both!

Will this note make any difference? I have no idea, but it's helped me just to write it down, and if I can just educate one person who didn't understand this disease - then I'll be happy. It might also come in useful in the future if I'm trying to explain to people what my disease means. 

So - here are a few things I want to write about on facts versus fiction.

1) Fiction 

Someone asks "What's wrong with you?" 

"I've got Rheumatoid arthritis." is the reply.

"Oh, I've got arthritis in *insert some part of the body like hands/knees here* as well. I know how it feels."

Fact.

Well, actually most people are mixing Osteoarthritis up with RA.

I honestly think this is one of the most common things people with inflammatory arthritis face. If we all had a pound every time we heard this comment, we'd be rich! Now, I admit, I didn't fully understand the full problems someone has with RA until I was diagnosed with it - but I knew someone who had RA for years, and I also knew they faced far more difficulty than Osteoarthritis presented me (I also have some OA). Yes, Osteoarthritis can be painful, yes, in some instances it can be debilitating.... I'm not saying it isn't at all. But what I am trying to explain, is that compared to RA, it is no where near on the scale of problems faced. This is not an exaggeration....... because my OA often doesn't cause me anything like the problems I get with the RA. They are very different in the way they attack my body (and I can tell you, the pain levels are also completely different). 

RA is also much, much more than wear and tear on the joints. It can attack organs (inc. heart, the brain and the lungs), as well as bone joints and bone density. 

I think the worst time I heard this was a nurse at the hospital, who asked me what I had - and then proceeded to tell me she had arthritis as well, and went on about OA in her hands. I tried to explain that RA and OA are completely different, but she just seemed to ignore it and carried on about her hands. I walked out of there, knowing if people with medical training are getting these things mixed up - then its no wonder a lot of other people are.

I'm lucky - my GP, specialist and all the nurses I see do seem to understand the problem...... it was just one nurse who didn't - But for me, it's one nurse too many. *I also have the greatest of respect for anyone in the nursing profession, since we have family who are nurses before anyone thinks I'm having a pop at them or their training - I'm not*.

Rheumatoid Arthritis is an auto immune disease, not wear and tear.

2) Fiction

"But you don't have knarled joints like I've seen."

Fact

Partly due to drugs, and partly due to the way the disease can manifest itself, not everyone will have full signs of joint destruction. But don't be fooled...... as with many aspects of this disease, it doesn't mean the body isn't under constant attack and damage isn't being done. I first had x-rays 15 (yes, fifteen) years ago, that showed bone density changes. The specialist said I mostly likely have RA, (but didn't fully commit at that point) but at that stage, medicines were not as advanced as today, and he said the medication could do more harm than good.

Bone density change is invisible to the eye - and yet is one part of the disease process. Some of us are relatively lucky, and we don't have a lot of bone destruction - and by taking the medication I do, this helps slow it even further. It is never stopped, just slowed. Equally, my blood tests show how badly I have inflammation in my body, and while my RA factor is currently down because of my medication - it is still not even at the "highest" level of normal, but some 50% about that. This is a vast improvement because it was over 200% above normal at one point.

Just because someone doesn't "look sick" - it doesn't mean they aren't. This is something that really needs to be remembered.

3) Fiction.

"But your not old enough!"

Fact

There is juvenile arthritis. Because so many people mix up osteoarthritis with the other inflammatory types out there, because Osteoarthritis tends to hit people as they get older, they don't understand there are far more types out there than just wear and tear osteoarthritis.

I was told by my specialist, there are close to around 200 forms of arthritis. Some have specific names - others are grouped to a type, depending on the symptoms being shown. For example, some specialists will take something called sero-negative blood results (in other words, the inflammation factor isn't really showing), and still call it as Rheumatoid arthritis, while another one might just called it inflammatory arthritis - but generally both will be treated with RA drugs. 

Juvenile Arthritis is a serious condition, and does exist. There are those of us who are also in our 20's, 30's and 40's when diagnosed. Age is not a factor.

4) Fiction

"By changing your diet/taking homoeopathic/doing exercise/alternative treatments - you can stop the arthritis."

Fact

While any good diet is important, as is moderate exercise, and always recommended - don't you think that if any of these "alternative" ideas of a cure worked, it would be something RA patients would be shouting from the rooftops at each other? 

Again, don't get me wrong, in some instances, alternatives can help...... I've used acupuncture for example, and found it did  help. Equally, in some instances, some supplements like cod liver oil have helped some people. But everyone is different and you will find what helps one person, will not help another. They are not cures - but something that might help ease the symptoms.....  My specialist for example warned me off the "don't eat citrus" diet that was being touted at the time in helping arthritis. He said that studies had shown it had very limited effect, and it was more important to get the vitamins and/or minerals from the citrus than leaving it out. 

Remember, we have been given advice from a whole team of medical experts - from the specialist's team (if your lucky, the specialist themselves), to the nursing staff, through to the physiotherapists and occupational therapists, as well as our own GP's. They all input with what helps, and in some instances, what could do more damage. Many of us see the specialist nurses monthly, let alone the 6 monthly specialist appointments. We also tend to see the GP in amongst all this - I seem to spend more time in hospital or doctor waiting rooms that my own sitting room these days! 

So remember - do you really think we'd be given this sort of attention if there wasn't a problem? This isn't something with an easy fix - I wish it was.

5) Fiction

I've already touched on this - "But you don't look sick."

Fact

This is because not every disease shows signs that it is there. This goes far beyond just RA....... and also, drug treatments are there to try and minimise the disease progress. RA drugs are pretty toxic...... one reason I have to get monthly blood tests. Again, they are drugs they don't just give out until they are sure no other option is helping. Several years on, and my medication is still being tweaked, but also upgraded to stronger ones as needed to just try and keep the disease at bay. I, for one, would rather not be taking any tablets at all - I used to hate taking anything for a headache - but the crippling effects I get without my medication scares me more. Remember, our disease is diagnosed by a list of symptoms. This is one reason I am writing this out, because I am so tired of people categorizing others for what they should look like, or feel like because they don't understand our disease.

Equally, a lot of us go around trying to maintain as "normal" a life as possible. Just because someone is smiling - it doesn't mean they aren't in pain. Many of us act as best we can - but for all the smiles you see, there are also the times when your crying in pain/frustration and at the loss of life we used to have. Many of us live a life of illusion, and very few people see the "real" side of what we deal with - including, according to recent studies - the medical professionals.

Many of us hate living up to other people’s expectations of what a healthy person should be, as much as we hate living up to other people’s expectations of what being sick is. 

So remember - Just because you might see someone getting out at a parking space with a disabled badge, and they don't "look" disabled - it doesn't mean that they are at their limit of walking without a stick that day. On another day, you might well see them in a wheelchair because they are unable to cope - and you wouldn't even think twice about it then.

Finally, just some general thoughts of mine.

Rheumatoid, and other inflammatory arthritis diseases are complex and life changing. Even with the drugs I take, and all the occupational aides I use (remember, given only after a full assessment) - Each day is a challenge. I try not to show it, and only those very close to me ever get to see how badly this can affect me day to day.

I can't fully expect anyone who doesn't face the challenges this disease brings to understand it completely - it isn't why I've written all this. But the closest I can describe is - imagine the pain you feel when you've stubbed your big toe badly. Now, take that pain, and place it in just about every joint in the body (you'll be surprised how many joints the feet and hands alone have). Now you can get some indication of what I face day to day. This doesn't even allow for the flare ups (when joints flare with heat and swelling), let alone fatigue, and raised body temperature. A lot of analogues for RA is it's like having flu all the time. Unfortunately, a lot of people have never had genuine flu - so find it hard to even imagine that scenario. 

The next time you hear someone mention arthritis that isn't simply osteoarthritis - please - remember some of this note, and don't write them off or think it isn't devastating in its own way. Please don't be among the people who judge, or give advice, or questioning stares because they don't understand a diagnosis. This is someone's life - I sincerely hope it is one you never have to encounter.