Please

General Blog
1

Thank you for asking how I'm feeling, whether I'm feeling better.

Better has a meaning for me that you won't really understand. Today I may be better or worse than I was yesterday or, indeed, might be tomorrow. But it's not better as you mean: healthy, normal, well.

I can pinpoint the exact day that I did last felt 'better' in that way. It was two days actually, a Wednesday and Thursday back in March 2012. They were 'droid days. I'd had a massive shot of depo-medrone and it was coursing round my body telling it everything was possible, everything was well within it, there were no limits to what it could do and the world was a fantastic psychedelic coloured place. Before that? Sorry I can't recall. Maybe sometime back in 2011? I'm not sure. I don't remember being well one day and not the next.

I've got a feeling this crept up on me slowly, insidiously, eating away at my wellness little by little but I sure remember the day it brought the bat down on my left foot! Since then that bat has been in use all round my body, sometimes a little prod and other times it totally whacks me for six with absolutely no warning at all. You can't see it, but I can definitely feel it, it never goes away, I deal with it on a daily basis.

I don't look ill. But look closely, this IS what someone with an invisible illness looks like. If you want me to look sick, please tell me what sick looks like to you and I'll try harder next time, I promise.

I will not 'get well soon'. It affects every part of my body from my thought processes to my skin. There is no cure, this is mine forever.That is what PsA is, a life-long auto-immune illness. Some days are simply better than others. The greatest thing you can do for me is say "I don't understand because I'm not walking in your shoes but you don't need to explain; I believe you".

Please be my friend and lend an ear when I need to talk my way towards finding acceptance, or the days when I simply need to vent. Know that you can do this without having to offer up advice or solutions - unless asked. Just be an ear to listen, hand to hold. Just be there. I may not seem like much fun any more but it's still me inside, I still have interests, hobbies, friends, family, hopes and dreams that I like to talk about and, most of the time, I'd still like to hear you talk about yours. You do not have to feel guilty about anything.

If you want to tell me about a cure, treatment, therapy, diet or supplement you've heard about or tried, I know you mean well. It's not that I don't appreciate it, it's not that I'm emotionally dependent on my disease or, god forbid, that I don't want to get well again, but please don't take it personally if I don't leap into action. In all probability if you've heard of it, so have I. Or I may have already tried it, been disappointed by the results or made sicker by the side-effects.

This disease is researched worldwide, there are doctors, scientists and fellow sufferers (an estimated 38 million of us) the world over who network both on and off the internet; if there was a cure for PsA or something which worked to relieve the symptoms, we'd know about it!

And please don't under-estimate the psychological effect that failing one treatment after the other has already had on me. Each time this happens I have to pick myself up, dust myself down, dry the tears and find the strength to carry on.

I know you'd love to have the time to take a nap during the day; I have to do it to get through the day. What really upsets me is when I get a sense that someone thinks this disease must be my fault, my choice; that I don't try hard enough, I'm lazy, a hypochondriac, weak, work-shy, anti-social. All of this implies I have some control over my disease. I don't. Or at least not very much. And yes, I can be irritable and grumpy and my stupidity tolerance is permanently set on 'low'. I am certainly not putting up with anyone's crap, I don't have the energy to give away. Chronic illness and pain has done this to me. I am simply doing the best I can - some days I will be the loser and other days the winner.

Come to me if you have any questions about my disease. Help me face my days without judgement.

2

Well I tried but the site only let’s me like this once, it deserves many many likes!! Thank you for putting things so perfectly! This will be shared. Jules you are amazing!

3

Like like like. Thanks for those experienced and wise words. I feel lile you are speaking for me, and all of us.

4

Thank you Rachael and Seenie .... I needed to find a way to deal with my feelings yesterday and that was the result.

To let you in on a secret, I have a great little notepad app on my phone and tablet where I jot down sayings or things I see or read that inspire or resonate with me, and it's also where I try out those 'how can I explain this' thoughts ..... and a lot of it came together in 'Please ....'

5

It does sound as if you are speaking for all of us, Jules, as Seenie said, too. I feel like I suffered in silence for so long....I would write on our calendar "feel good day" on the rare days throughout each year when my PsA symptoms started getting the best of me.

I do have to say I feel a lot better on Enbrel, and sometimes I even feel guilty how much improvement I've got from it when I hear how it or other biologics didn't work for some people. But, I still have pain. I think with our disease we get so accustomed to having pain we don't even know what normal feels like--this is our normal--some pain in varying degrees, all day long, every day.

6

Thank you, Grandma J. You're right this is the new normal :)

7

After a particularly bad, and I mean BAD!!! day at work (imagine all that could go wrong in a healthcare setting and you’re probably somewhere near) your post, Jules, has spoken for me too, and let my feelings “burst the banks and have a good flood” which has de-stressed me no end…now if you could get rid of my cramping muscles in my legs I would call you a miracle worker!! :wink:
Thank you for finding the words for me, it never fails to amaze me that despite not dropping in for a while, when I’m in need you are all here :slight_smile: x

8

We are all in this together, Louise, I'm glad I've helped in any small way. Is your lovely fella around tonight to give those legs a massage?

9

Unfortunately not…he’s working in London tonight, its do it yourself time :slight_smile:

10

Everything I feel about this condition has been so amazingly put into words by yourself Jules! Thank you so much! days roll in to weeks an so on ... and I forget to pinch myself to say that I didn't deserve this! I'm a professional Ballet and contemporary dancer and every time people hear the words dancer and arthritis in the same sentence, they automatically think I triggered it. It couldn't be further from the true ! I in fact had a seriously life threatening illness at the age of 11 and from then on the symptoms crept up! Its taken me 5 years of excruciating "recovery" (Since my last MAJOR flare pre-medication) to regain my career (which is by no means is how I wanted it to be)... to now be faced with the fact that I just cant continue fighting with it ! Its my soul my everything ! But I for sure know that this experience has made a stronger minded person... with a deep sense of pride! Thank you again for your beautifully put words... made me tear up !