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.

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.

To know or not to know….

In biology seminar the other day we started discussing a topic that I personally find very interesting. Have any of you hear about 23 and me? It is a company that provides DNA analysis, along with possible risk factors for diseases. It’s a really cool idea, and the fact that anyone (well who can afford it, although it is not very expensive) can send in a blood sample and get their results, but should we be doing it? Do we really need to get this information, does it actually help us, or does it cause more harm? Do I really need to know that I might have a 3% higher risk than the general population of developing breast cancer?

Some might argue that knowing this might help eliminate things from our environment that further increase or chances of getting this disease. If I know I have an increased chance of brain cancer, I would eliminate other things that might cause it. My opinion is that you should be implementing these changes anyway, and that if you were going to you would. Why should I wait to know my risk in order to be motivated to eat healthier, not smoke, or exercise more. I should be doing that regardless.

For me though the biggest problem is should I know, or does it just create a self-perpetuating cycle. If I know I’m at risk for it, it stands to reason I am much more likely to worry about it, for it to occupy my thoughts more than it would. But why should a disease that I might not get, or even if I do get it, cause me undue stress before I even have it, if in fact I ever do. Does the stress of knowing, make it more likely to actually get something you might not have? Does it become a self-fulfilling prophecy?

If I think back to that magical time before.. before the autoimmune arthritis that has made my body its home, that has started a war that I might never see end… would I have wanted to know. Would I have wanted to know that I would have, could have, got this awful disease. NO! It would have tainted that before, made it less carefree. Why would I have wanted to live with that knowledge, it wouldn’t have changed the outcome, wouldn’t have changed how my life is now, but it would have changed how my life was then, and not for the better. I already have to live with this disease now, with the harsh realities and devastation of it. I am so glad for that period where I didn’t know what was coming, didn’t need to, when the words arthritis, autoimmune, chronic meant very little to me. If I could go back and chose to know, I would choose not to, because sometimes knowledge isn’t power, it’s not that silver lining we think it is.  Knowledge isn’t always a blessing, sometimes it’s a curse. Sometimes it’s just better not to know.

(Just so you know I have not participated in 23 and me, and all of this is merely hypothetical)

 

Letting go

I think I posted here a while ago that I had joined the dive team, because I had decided that while I was in a good place, joint wise, I should take advantage, and do the things that I had missed while my autoimmune arthritis was over active. One of the things that I had missed so much was exercise, all and any kind, but having done gymnastics for years, and diving for a little while, the dive team just seemed to call out to me. Beckoning me to come closer, to go for it, and take the leap (yes, pun intended).

But lately I’ve been struggling. I’ve had a hard time with my immune system due to all the immunosuppressive medications that I am on. I would say I’ve had between 8-10 viruses within the last couple of months. Which at first was alright, well, except the fact that I was sick all the time, but it felt like more of a nuisance than a big problem. But lately the viruses have been getting worse, sticking around longer, and worst of all triggering my autoimmune issues. I’ve been exhausted, my joints have been flaring on and off, and then on top of that I’ve still had to deal with having a virus. This has led to lots of missed classes, work that seems to endlessly need to be put off to tomorrow because I can’t manage to get it done, and missed dive practices. Every time I’ve felt better and up to trying to get back into the water again, the next virus seems to come along and knock me back off my feet. I’ve been trying really hard not to let this stop me from diving, from doing what I want to do, what I feel I should be able to do. I’ve been showing up to practices, and stretching and working out on the bikes when I can’t dive, and pushing myself to get back into the water as soon as I can, which perhaps has not been the best answer. But I wanted to keep diving so badly. Diving has made me feel really happy and fulfilled, it’s given me a reason to get up every morning and the team is so loving and supportive.

But at some point somethings got to give, at some point you have to let go. Let go… oh boy is it hard to let go. There have been many, many tears shed. Lots of anger, sadness, denial, and even feelings of failure in this decision. But at the end of the day it needed to be made, diving right now just isn’t the right thing for me, and no matter how many ways I look at it, I can’t change it. I just can’t, not with all the wishing in the world. So my coach and I have decided that it would be a good idea to take the rest of the year off diving, and return to it in my second year, if I think I feel up to it. In the mean time I’m going to work on getting this beast of an autoimmune disease back into control, and slowly building up my fitness and stamina, with the goal of returning to the team next year. I’m coming to accept this decision, and starting, piece by tiny piece, to let go.

Silver linings

With any chronic disease I think it is very easy to get sucked into the swamp. That all-consuming place where things aren’t going right, when we’re sore and tired and getting up each more seems like a chore. We’ve all been there. That little known place where we are not sure if things will ever be right or ‘normal’ again. Today though I want to talk about some of the good things that have been happening, the positive changes, that at one point seemed more like a faint possibility, something I would have loved to have, but wasn’t counting on.

Over the past week I saw a cardiologist, because my heart is weird. Like the rest of me, it wants so badly to be out of the box. I have had pretty much persistent tachycardia, since diagnosis of Enthesitis related arthritis (part of the ankylosing spondylitis family). My heart has felt off, beat so hard I think that it might be a hammer, more than a heart. It has been painful, but mainly it’s been fast. This cardiologist was lovely, and unlike most people who thought I should just deal with it, he realised that if it was interrupting my daily life, we should do something about it. So after a normal echo, we decided that a 48 hour holter, should be repeated (I had one about a year ago). A holter is like and ECG (a heart monitor) that you keep on, in my case for 48hours. Here comes the good part. My holter does show that my heart beats fast, it was better than the last one I had. So the cardiologist thinks this shows a downward trend, it’s going back to normal. Yippeee… I think this is due to the Remicade, which seems to be making headway against this disease. Double yippee…

We did however decide to still trial me on heart meds, to see if this makes a significant difference, else we will leave it for now.

This week I also had cortisone injections into my jaw, my first ever joint injections. It was sore, although netter than I thought it would be .It was nerve-racking. It felt odd, especially the left side, which felt like a big cylinder was being knocked through layers and finally pierced into the joint. Most likely because this is the worse of the two, and most likely has some synovial thickening and a smaller joint space. The right side though just seemed to glide in, and although still sore, wasn’t as bad. All of this was done without any anaesthetic, as Dr. P says that there is a nerve that is close to the jaw, which can make your face droopy, and he wants to know whether it has happened due to the injection or the anaesthetic. Makes sense, and I was actually happy that this meant less needles poking me, and local anaesthetic has never really worked for me anyway.

How is this good, you might ask? Well, since the injections my jaw has been so much better. I opens better, it clicks and grinds less, it’s not sore all the time. I don’t have a constant headache anymore, and when I have one it’s less intensive. also my neck seems to feel a bit better too. Which makes me really glad that I made the decision to have the joints injected.

Last, but certainly not least, I have managed to wean off of my opiod patches (durogesic patches, similar to morphine), and now am only taking Tramadol as needed. This is so great. After almost a year of having pain that was needed to be controlled by such strong pain meds, I am free of them for now. It is such a blessing to be more in control of my pain, and on top of this disease. It’s still hard, but a slight weight has been lifted from my shoulders, and I am going to enjoy every minute of it.

A little bit of everything

Sorry I haven’t done a couple of the recent HAWMC posts. I have been ill with a virus (probably) since Thursday, which left me feeling like I was going to pass out most of the time, and caused my heart to flutter and beat oddly. All in all, a horrible few days. This kept me from writing. Even if I had, I’m not sure any of it would have made sense. So I have decided to write briefly on each of the posts that I missed, so that I’m not cheating you out of the full experience. Here we go, get ready for a marathon post:

.    Day 25 (April 25) – Learning

Ø Share something you learned from another Health Activist (that everyone should know!).

I think the most important thing that almost every health activist has taught me, is how to have the courage to put a little piece of you out there for the world to see. That in sharing these shards of your being, you can touch other people, teach other people, and show them that it is possible to do the same. That in putting yourself out there it is important to show all sides of the equations. Not just the moments of happiness, the triumphs. But the challenges, the anger, the sadness and bitterness too. The times when the road you’re walking seems to long and to hard, and you just want to dig a deep hole and stay there instead. There isn’t one thing one emotion one time that defines this experience, and if you want to share it, to use it as a tool to help others, you need to be willing to share it all.

.    Day 26 (April 26) – Pain-Free Pass

Ø What’s a day that you wish you could have used a pain-free pass (either in the future or the past)? How would being pain or worry-free impact that day?

I wish I could have had a get out of pain free card on my graduation. This was to be a day of celebration. It was to be the last day we would spend together as a year group, as a part of UWC Atlantic College. It was the last day I would spend before my friends, who through the experience of us all being far from home (my school had people from 84 different nationalities) had become like family to me, would be scattered all across the world once more.

It was a day that was filed with happiness, but tinged with the sadness and weight that we would be saying goodbye soon. That we would some people, but when that would be we didn’t know, and that others we would never see, and even if you were not lose it was still saddening, for these people where part of your community, a face that you walked past everyday, but one you would not walk past again.

It would have been great to have a pain free day. To be able to participate in the game of ultimate Frisbee, which many people from both years participated in. To be able to walk with my friends to the local pub, where everyone congregates on the last evening, to spend some quality time together.

But although I was not able to do this, it was still an amazing day, and I have awesome friends, who decided to stay at the school with me instead. But I think any day that I could have pain free, would be an amazing day, no matter what I was doing, I would take it.

.    Day 27 (April 27) – Titles

Ø If you wrote a book about your life, your community, your condition, or your Health Activism – what would you title it? Come up with 5 working titles.

I think that there is a part of everyone, be it big or small, which has always wanted to write a book.  I know I would. I would love to share my story, my experiences, the things that have and haven’t worked, the wisdom I have gained, or hopefully gained. But I don’t know what I would call it, so I’m just going to throw some ideas out there, and you can tell me if any of them catch your eye:

  1. The bumps in the road
  2. When the biggest mystery of all is your own body
  3. What the hell is it?
  4. Learning to live with the monster within
  5. The road less travelled

 

.    Day 28 (April 28) – Must Follow!

Ø Create a must follow list for your community on a single social network. Share your top 5-10 tweeters, blogs, or Facebook pages.

I feel like I have already shared the blogs that I love before on this blog, but I have been told that repetition gets the message to stick better, if only because you don’t want to be reminded 50 times a day any more. So here we go again:

.    Day 29 (April 29) – Congratulations

Ø We all know Health Activists are awesome. Share three things you love about yourself, things you’re great at, or just want to share. Don’t undercut or signpost!

I think everyone finds it hard to praise themselves, to admit that they are good at something. Whether it is personally, or publicly. We all fear that we will be labeled as arrogant or self-centred. But sometimes it can be good to acknowledge the things that we are doing right, instead of only the times we get it wrong. So even though this exercise makes me feel uncomfortable, these are the things that I have come up with:

  1. I am proud of the fact that I have managed to overcome my needle phobia. I used to be absolutely terrified of needles. I would try my hardest to get out of blood tests, vaccinations, and anything else that involved a long sharp pointy thing. I would completely freak out before anything needle related, and made my mom put numbing cream on and come and hold my hand (more like me crushing here hand). Even at 15 years old I still had to have this done. The thing that changed this, was my first hospitalization in Wales, where I was at boarding school. My first IV I’d had (well conscious anyway), happened while there was no-one there with me. As my parents where in SA, and my house parent had classes he had to teach. It was at this point that I decided I had to grow up. But it wasn’t an easy thing to do, it took a lot of self-discipline and deep breathing to allow the surgical intern to put that IV in, but after that turning point it has been so much easier. I still get the occasional butterflies in the stomach, but nothing near to what I used to experience. I mean I give myself my injections, no problem now.
  2. I am a loyal person. I will support you through anything, be the shoulder to cry on, a listener to all things, good or bad, someone who will defend you from unfair judgment, and stand by your side through thick and thin. This is something that I admire in myself, and look for in others.
  3. I want to share my love for all things medicine and science, and my hunger for knowledge and need for understanding. This is something that has both come in handy, and been a challenge to deal with, when it comes to my chronic illnesses. It has helped understand what is going on, enabling me to better communicate with my doctors, and make informed decisions on treatment options. It has also caused me a lot of grief, as my need to know everything, to put a name to things and understand them has collided head on with the uncertainty around my condition, and there are still many things that are just big question marks. It is something that I am learning to manage, one baby step at a time.

.    
Day 30 (April 30) – Recap

Ø Describe your HAWMC experience in one word!

Eye-opening

 

Technology dependant: HAWMC Day 23

  • Write about how your life would change if there was no social media.

I think I would feel a lot more isolated with my condition, if I was not able to connect through the internet with others with my disease, autoimmune diseases, or just chronic diseases in general. Social media has allowed me to truly see that others go through the same or similar things to me, as I am able to glimpse into their lives, via blogs, Facebook, twitter, support groups and so many other means. It reminds me that I am not alone, and often validates what I am feeling. The anger, the frustration, the isolation, the sadness, and the joys and happiness too. It means that there is someone else there who I can talk to, who knows exactly what I am talking about. This allows a very different kind of support to that which your family or friends can give you. Even if that is great too. It allows me to bounce ideas off people who know the ins and outs of the diagnosis, the doctors visits, the meds, and so much else. To gain knowledge from people who know more, have experienced more or have been battling these diseases for longer than I have, or just has taken a different approach. It also allows me to give this back to others, to help them when they need some guidance. To comfort them when they are in that black hole that is grief and despair. To celebrate their highs, and stand strong through the lows. To be a friend who knows. This is the greatest gift that this experience in the world that is social media. Something that would be sorely missed…

Social media can be that life line that you are looking for. In some way it was this and so much more for me. without social media I wouldn’t be the person that I am today.

 

DAY 16: Misinformation

So the prompt for today’s post is:

  • Tell us 3 things that are true about you, your condition, or your Health Activism. Tell us 1 lie. Will we be able to tell the difference?

febr226.gif

To be honest I’m not exactly sure why we are doing this. Isn’t one of our main missions as health bloggers to stop the spread of misinformation about or diagnoses?

Having said that lets play a little game…

  1. Ankylosing spondylitis can cause the spine to fuse in some cases
  2. The hallmark feature of AS (ankylosing Spondylitis) is the involvement of the sacroiliac (SI) joints
  3. Everyone with AS has a genetic marker, HLA-B27
  4. AS is more common in men than women

I will reveal which one of the above statements is false in my next post. So stay tuned …

HAWMC DAY7: Sensationalise

  • Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?

Well let me see… you wouldn’t believe the amount of rubbish that people have said to me.

1. That I should get this bottle with special snake venom, because in small amounts it’s not dangerous, and is said to work miracles. (Hell no)

2. So are you really ill because you always seem fine when you are with me. (Well! It would be a bit of a downer if I wasn’t nice and smiled, and tried to act normal, now wouldn’t it. Plus I want to feel normal.)

3. Wow it must be so cool to be on morphine. You must be high all the time. (Umm… no)

4. If you drink Chinese medicine tea, it will cure you (really? Why isn’t everyone doing that then?)

5. You’re too young for arthritis (I wish, but unfortunately anyone can get it.)

6.  This isn’t completely arthritis related, but at first they mistook my arthritis for appendicitis, and a doctor has told me: If you hadn’t had your appendix out I would say you had appendicitis (ok? But I have had it out? Anything else? Why are you a doctor?)

7.  When I was away with a friend once, one of her brothers saw me do my Enbrel injection and asked if I was shooting cocaine. (I just laughed)

8. Someone (who I don’t know) asked me if I was a recovering alcoholic when I told him I couldn’t drink. I told him he should come to the next AA meeting with me. LOL

9. If you would just go out and exercise more I’m sure you’d feel better.

10. I wish I could just stay at home all day, it’s like you have a constant vacation. (No, you don’t!)

11. If you just thought happy thoughts you would be a whole lot better (Happier maybe, better… no)

12. When will you be better (I wish I knew)

13. Well at least it’s not cancer.

14. Are you depressed? (what difference does that make? It doesn’t affect joints right, or don’t you know that?)

Hears hoping you have a good day,

Rebecca

HAWMC DAY6: Letters

  • Write a letter to your condition – what do you want to get off your chest?

Hey all of you. Yes you autoimmune diseases. Listen up.

I know that you are like a little kid in a candy store right now, and that candy store is ME. So listen up to what you are doing to me, that what might be a sweet pleasure to you, is a well… a sour grape for me. When you run around having your fun, you are wreaking havoc, and who has to deal with the mess, me. You make my bones feel like someone is try to hit a nail into them, and often my legs feel like mush, or wobbly jelly that is just managing to stay up. You make my throat feel like someone has raked their nails up and down it, and my mouth has morphed into sandpaper. My eyes sting, my lungs burn, my heart is running a marathon and at above 100bpm constantly, I will be surprised if it’s not winning. My skin has decided to follow the example of the South African roads, and become marked with potholes. If that wasn’t good enough you’ve selfishly drank up all the fizzy cola that is my energy, and left very little for me. You keep me inside lying on my bed, or if I’m lucky I’ll go see a friend. I can’t do the things that I used to do, but I refuse to give in to you. I could go on, but I’m sure you see, just what your fun is doing to me.

But you better watch out, glance over your shoulder. For one day this nightmare you’ve made will be over. And when I catch you I promise to do, all in my power to give what’s coming to you. I lock you in a cage, and keep you there till I have died of old age.