Tired

I’m tired.. Tired of the million different medications I have to take. Tired of the doctors visits, the tests that never seem to end or bring any real answers. I’m tired of being sore and stiff, tired of being different, but most of all I’m tired of being tired. Tired of waking up and having no motivation to do anything, not because I don’t want to, but because I simply don’t have the energy. I’m tired of spending so much time asleep and mist of my waking hours wishing I was back in bed, only to get there and have that precious sleep be so elusive. I feel like Alice lost in wonderland unable to find my way back no matter how desperately I search, with each way I turn leading me farther away from home. I just want to be done with all of it.

At the moment I seem to be fluctuating between two mentalities. I either feel like I just need to stop everything, stop my medications, stop the millions of doctors visits, stop searching for the answers that might never be found. Or feeling anxious about any change, and wanting all my meds to stay the same because I can’t bare the thought of things getting as bad as they were.

So how have I dealt with this? By inviting in my good old friend avoidance. I’ve been putting off making doctors appointments, putting off tests, even putting off getting my refills. Last week was the first time pretty much ever that I ran out of a medication because I had just kept putting off getting the refill. But their is only so much avoidance one can do, and I think I’m reaching that point.

I just want to shed this weight that is autoimmune disease. Leave it in a corner and never look back. But it’s out of my control, like so many other things at the moment. I just have to work my way back to that place of acceptance, I just wish for once it was at the bottom of the hill rather than the top. I know I’ll get there and the view from the top will be all the better for it, as long as I keep putting one foot in front of the other.

Here we go again

So my second semester at university started this week, and to say I was less than excited for its commencement would be a huge understatement. I didn’t want to come back, I didn’t want to go to class, I didn’t want to get thrown back into the craziness. All I felt about coming back was dread. I couldn’t really even feel that excited about seeing my friends again, even though I missed them terribly. All that kept spinning round my head was how horrible I had felt last semester, how it had sapped all the energy that I had, how I felt like I had taken some giant leaps in the wrong direction. I kept having flash backs of all the times spent crying, just wishing that I could go home, that I could leave school, leave it all behind. Until reason set in and I could push (with much difficulty and probably even more tears) aside how awful I felt, how tired I was, and how this made me just want to give up; and see exactly what I would be giving up on. I would be giving up on something that I love, because I do love to learn, leaving my friends who no matter my mood never failed to make me laugh, and giving up on my dreams.

But even the thought of how much I love the place I am at school at, how amazing everyone here is could get me to feel anything but dread and pure fear. It couldn’t get me to stop thinking about the what ifs. What if I end up in the same place I was last semester, what if I ended up in a worse place, what if, what if, what if…

This was only made worse by the fact that having that much needed winter break had made me feel so much better, almost like a completely different person. I could function again, I wasn’t constantly being dragged down by deep, soul crushing fatigue. I wasn’t sick all the time. I wasn’t perfect (I might never be) but I was so much closer to it than I had been during that semester. And all I could think of was how hard it would be to lose that feeling again, to be thrown backwards.

So when the first day of class rolled around I was not in the best of moods, but after my first class I must say I was feeling a lot better, a lot more positive and excited and maybe even happy to be back. Three days in and I’m still feeling good and am so much more positive about the whole back to school thing. I am enjoying my classes, loving my professors, and sharing endless moments of laughter with my friends. Hopefully I will continue to move through the semester in this way, hopefully things will stay good. But if I don’t I just hope I see how much I love being here, and make sure that I enjoy the experience no matter what is happening to me health wise, because it truly is a magical place.

Two years and counting

Two years ago to the day I experienced the onset of symptoms that lead to my diagnosis of Enthesitis Related Arthritis. I remember that day with a clarity that time has been unable to erase. The stabbing pain that was mistaken for appendicitis one too many times. Somehow I think I will always remember that day, will always be able to cast my mind back to it and see it exactly as it was. Who could forget the moment their life started to change? Who could forget the moment where you felt like everything had been pulled from underneath you?

But having said all that I completely forgot that today was the day, and if it hadn’t been for a comment from my friend that triggered the memory it would have completely flown by without me being any the wiser. Whereas last year was the complete opposite, I knew it was coming from a mile away. I had more of a count down for my first year anniversary f the day arthritis entered my life than I did for my birthday, which happens to be four days later. It felt like this big milestone that I had managed to survive with my little friend arthritis for a whole year. I had come out a little bit battered and bruised, but I had come out the other end. We had a cake to celebrate my one year anniversary, because it’s always better to laugh than to cry right.

I don’t think it’s a bad thing that this years anniversary almost snuck by. It means that I don’t think about arthritis all the time, that there are more important things, and rightly so. It reminds me how lucky I am, to have a relatively low amount of disease activity at this time, and while I might not be in remission, I am a hell of a lot closer to it than I was last year. Two years on and I’m still showing that I may have arthritis, but arthritis doesn’t have me.

All I want for Christmas

All I want for Christmas is one day of normality. One day when I can get all my work done, when I don’t have to worry about getting it done, or have to walk that fine line between pushing myself to get it done, and knowing my limits and when to ask for an extension. that dreaded word, extensions. How I hate it.. I hate feeling like I can’t get everything I want to, everything I need to done.. I hate feeling like I am using my illness to get special treatment, even though I know how much I debate over asking for them, how many times I have turned them down when really I shouldn’t have, how guilty I feel about getting them… Most of all I hate how each and every time they remind me just how different I am from my peers.

I have, let’s admit it, been struggling with school lately. I’ve been struggling to make it to all my classes, struggling to pay attention even when I do, struggling to get all the work done and catch up all the work I’ve been missing. Just plain struggling. Coming into university I knew it wouldn’t be all smooth sailing. I knew there would be difficulties that I would have to learn to deal with. I knew there would be set backs, and that my experience wouldn’t be the same as everyone else’s (but then whose is?). But I got off to such a good start. It wasn’t perfect, but for me it was great, really really great. I so badly want to be in that space again. but I’m not, so now what…

 

That terrible T

For me since the first symptoms of my AS started showing up there has always been this terrible T looming on the horizon. And no, I don’t mean the terrible two’s. It’s the idea of travel that scares me, that gives me butterflies in my stomach and makes my blood run cold.

Travel in my mind means pain and stiffness from being trapped in a small space for way too long. It’s energy draining and has sometimes reduced me to tears, and made minutes turn into hours, even days. I no longer like long car rides, or flights. They have become things to endure, something I just have to grit my teeth and get through. They’re an ordeal.

I have however found some things that make trips easier, something’s that I try to remember to do every time, and sometimes I get it right:

1. If you are flying ask to go through the disability lane, you often have to explain why (especially when they see a seemingly healthy teenager in front of them), or have a doctor’s note handy. It’s worth it though, not to have to stand in the enormous lines, that I can’t manage joint or energy wise, and if I feel like I can, I will happily stand in the line.

2. I’m pretty sure all flights have pre boarding. Which us where they allow passengers who need assistance, extra time or a legitimate reason, to board first. If you feel you need this, and I have before when I have not been at my best (once again use don’t abuse, if I don’t need this I don’t use it), allowing me to have help and time to get settled, and avoiding the lines and jostling that happens during general boarding.

3. Make sure to pack more meds than you need for the time period, just in case. You never know what might happen. Also keep all meds, and extra (I always pack so much I think I could survive on a desert island for a while), that you will or might need with you. I also carry a doctor’s letter around with me that lists all the medications that I am on, because I carry so much that I am terrified someone will think that I’m trying to smuggle them or something, and take them away.

4. If you find those neck travel cushion thingies comfortable, which I don’t, bring that with. It might make the flight a little easier.

5. Get up and move around and stretch out those sore achy joints, as much as you can. Walk up and down the aisle in the plane, anything, just keep moving.

Is there anything else you would recommend that would help while traveling?

 

Bring on the crazy

As many of you know, sleep problems often accompany many autoimmune and chronic pain conditions. Ever since I was diagnosed I have had trouble sleeping. In regards to this it seems I have experienced everything and anything under the sun. I have had problems getting to sleep, problems staying asleep, nights where pain wakes me up, night sweats, or sometimes even when I do sleep it doesn’t feel like I’m really sleeping, more like a half asleep, dozing, kind of feeling.

So a couple of months ago I made the scary decision to go onto sleeping tablets, something I was trying to avoid like the plague. Since I have been on it I think my sleeping habits have improved and I have felt a lot more rested in general. But, and there often seems to be a but, it comes with its own set of side effects. Since I have started using stilnox, most nights it has brought the circus to town.

This med is great in terms of finally letting me get some much needed rest, but it makes me a little odd, a bit crazy. I take it usually right before bed, and then under cover of night the show begins. This drug makes me feel high/drunk/off/just an odd ball. I have had nights where I have had conversations between my hands. Moments where a song pops into my head, and I only realise seconds afterwards that I am belting out the song, not just going through it in my head. I have had dialogues with myself, had deeply insightful monologues, made funny faces at the ceiling, because I feel like I have just newly felt how it impacts my muscles, and how fun and funny it feels.  I have seen my pillows piled up next to me like a mountain, which I have then climbed with my fingers. I have made up songs, thought up whole stories in my head. Even crept across my bedroom on my tippy toes to sneak chocolate out of my cupboard (as if anyone could see me through my closed bedroom door) then ninja crawled across my bed, misjudging the length, and found my self on the floor, with a sore bottom to show for it.

This one med has made my nights hilarious. It has opened the door and invited the whole circus in. I swear you could make a comedy show out of the things it tempts my confuzzled brain into doing.

But it works, it does what it needs to do, it makes me sleep. Something that I have sorely missed. So bring on the crazy, just make sure the door is closed first….

HAWMC DAY2: Introductions

So it seems the time has come for some introductions, and today instead of choosing just one of the prompts I have decided to try my hand at both. So here goes:

  • Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

So I thought I might do this list style, in order to try to make it as clear as possible, seeing as I am diagnosed with quite a few things, and more seem to want to join the party every other day.

  1. I have Enthesitis Related Arthritis (A form of Ankylosing Spondylitis), which since I am thought to have had it since at least the age of 8, can also be called Polyarticular (meaning more than 5 joints involved) JIA. Which is Juvenile Idiopathic Arthritis. Ankylosing Spondylitis for those of you who don’t know is an autoimmune disease that is primarily associated with arthritis of the spine. Although it can affect the ribs, neck, hips, Achilles tendon, due to the involvement of enthesitis. Confused yet? Continue reading

The Dreaded Brain Fog

Brain Fog. Something that almost everyone with an autoimmune condition or chronic pain experience, and have to manage. However, it is one of the less known symptoms outside this community, and one of the hardest to explain to someone so that they understand (or at least  have a notion of what it’s about)

If you look it up in the dictionary it says:

Cognitive dysfunction (or brain fog) is defined as unusually poor mental function, associated with confusion, forgetfulness and difficulty focusing.

I think that this says what it affects, but has almost no impact in conveying what it feels like. I think that in this respect if you look deeper into the imagery of the word “brain fog”, it says it all. It is literally like your brain is shrouded in fog, and you can only see a certain distance in front of you. You may be able to see 2m ahead, or perhaps only 25cm ahead. Depending on how bad the fog is at that time. So you are in this fog and you can only see (think of) a certain amount of things. You bumble around in the dark, searching arms outstretched for what you know is there, but you have to wade through this thick fog to find it. You bump into a bunch of other things that you have no need for at the moment, until you find what you want. Sometimes no matter how hard you try, how long you wade through that mist trying to push it aside, you just don’t get it, and you have to accept that you have to leave it for a sunnier day.

For me personally this symptom is one of the hardest to deal with, because there is almost nothing I can do to change it, and no matter how hard I try, I just can’t power through it. I have had days when there are some common words that take me a couple of minutes to think of, or I forget the name of the restaurant where I am going for lunch. There are even days when it is so bad that I simply can’t function, and even watching tv takes to much concentration. But then I have days when the fog has lifted, and I know that I can keep going, that it won’t always be like this.