Pain and Fatigue

PAIN & FATIGUE

It's been a while since I wrote a blog in its true essence and for the last few weeks I have been trying to think of a good enough topics.

While chatting on Instagram with a triathlete who has similar issues to me but she just completed her second full distance Ironman race a few weeks ago it came to me.

I wanted to write about the Pain and Fatigue that we suffer with this disease or diseases.

Social media is good in one way, certainly for connecting with others who have similar issues but one thing I noted recently and I am completely guilty of it is that the bad side of it is posting all our achievements, the "Look what I can do" thing as I call it.

What I mean is while posting photos and videos of all the achievements people are not seeing the effort, the pain, the fatigue the blood sweat and tears that goes into doing the activity to create these achievements.

We tend not to publish these things. I for one am totally guilty of this I don't post a photo of me getting out of bed in the morning trying to take my first steps of the day. I don't post the photo of me trying to walk to the train and up and down the steps, why? I suppose these are not the photos or video's that people want to see or maybe they do I don't know.

I was also looking at someone else's Instagram post and she did make the comment that she did suffer pain and discomfort relating to her Arthritis but you would never know as her posts are all of her lifting weights and being in the gym daily and she is energetic and always smiling.

I question, is this the image we want to portray to followers and people who we try to inspire?

I am acutely aware that Arthritis is person specific and what I can do others only look and say I wish I could do that.

I totally understand that people will look at my photos and think, well he only has RA in his little finger or something like that, because if he had "Real" RA he would not be able to move most of the time, he certainly would not be smiling as he would be feckin knackered with the fatigue that also goes with this disease.

I wanted to just call this out a little and try to explain to people who read my blogs and follow me that I do have my own level of RA and coupled with my Hemochromatosis I suffer quite a bit.

So I will try describing a normal enough days for me.

I am in a degree of pain 24 hours a day, some days are worse some days are what I call good days which I'd guess would be a 4 to 5 on a normal persons pain scale, my bad days would be from 8 to 10.

I take medication for my blood clots and gout (it's a trial for my hands actually).

I try not to take painkillers but if I have to I will, I have arcoxia or Ixiprim but only on really bad days will I take them as I don't want to wreck my stomach too.

I get up in the morning, and the first few steps into the bathroom are so sore, my ankles from my night's sleep just don't like me putting my weight on them and just hurt. A lot of times I don't get a good night sleep, I tend to toss and turn or my ankles just hurt so most times I wake up tired which is not the best way to start a day, also as the week goes on it gets harder to get up.

I then get dressed; most of the time my lower back is sore too so things like putting my socks and shoes on is painful too.

I manage to get down my stairs with my ankles still giving out. I then start walking about, my walk to my car is sometimes sore, I tend to limp more than walk.

I then walk from the car park to the train, again limping, especially coming down the steps, limp to the train.

Most mornings I have my training kit either on me or in my bag. Anyone looking would absolutely not believe me if I was to tell them I was getting off the train to go to the gym or the pool.

I would sometimes loosen up a little before I get off the train but mostly I am limping into the pool, a lot of times I am trying to gauge my energy levels for the session I am about to do, am I ok ? Can I manage this? Am I actually awake?

I don't know most times, I get changed and hop into the pool or head up to the gym.

I can't do a pool session without knowing in my head what I am going to do.

I start and I just get on with it and I think this is where we (and I mean, the people with these diseases not just me) differ to others.

We just get on with it, we generally have a goal that we want to achieve and understand that to achieve it we need to do this it's not an option we need to train to achieve our goals.

I also think that we know that shortly after starting whatever exercise or session we are doing we will start to feel better, less pain and more "normal".

By the end of the sessions we feel good, tired but good.

This is what exercise brings to people who suffer with these diseases but unless you go through that pain barrier you won't know.

Generally this feeling remains most of the day, this is one reason I like training in the morning time too. I have done sessions in the evening after a day in the office and can really note the difference in my energy levels it is so hard to train in the evenings as I am naturally shattered after the day.

Some mornings though I know I just don't have the energy and if I were to do the session I am risking further issues such as triggering a flare up of my arthritis and actually pushing back my progress in training so I make the decision to skip training or I will go to the steam room and sauna and chill.

I have to be careful to avoid the constant draining of my energy but yet balance this with doing the right training for whatever I have to train for. This I find really hard and to be honest have yet to crack this one. It's a constant that I need to stay on top of.

I don't have a coach or a trainer for this specific reason, I would really like to find one who can help me improve my swimming, biking and running but don't want to keep telling them I couldn't do this session for this and that reason.

I mean what's the point plus it's introducing a negative into your sessions which is not such a good idea (in my head anyhow).

Obviously I have had to take a back seat this year with my hip replacement meaning that I have had to start my training all over again really.

I certainly feel like it, I am delighted to be back in the pool and on the bike but careful not to push myself too hard and doing damage.

I feel for me it's a constant circle, I get to one level of fitness then get injured, sick or something and have to start again. I suppose this is the nature of having these diseases.

So while social media provides the platform to publish all these great and inspiring images of people with Arthritis and other autoimmune diseases doing brilliant things like finishing an Ironman the actual real effort it takes to even post these pictures goes unnoticed.

In reality it's even harder for people like me to get fit, train and to then try competing with normal able bodied athletes, hold down a job, have a family etc.

So to those people out there doing amazing things I salute you keep doing what you do and know there are people out there for whom you inspire every day.

I wish you all the best and the best of luck with all your endeavours in the future.

My own goals for this year are an Open water swim in 2 weeks' time and a 60k bike sportive at the end of September. Otherwise I want to get training seriously, and maybe get back jogging and perhaps complete a few park runs before the end of the year.

I have goals for next year, but I will share them at a later date when I fully commit and sign up to.

Ken - @thearthritictriathlete