I often find myself wondering where I would be in my life today if I never got sick. What relationships would I have kept? What opportunities would I have been able to take advantage of? What would be different?
I found myself pretty upset over the past couple of days because I know that my life has taken the road less travelled, one with many bumps and pot holes and wrong turns.. With a couple of U-Turns thrown in just for fun.I know everyone encourages people to take this less travelled road, but sometimes you just want to be normal, you just want to blend into the background, be the paint on the wall, invisible .
I’ve had some family (Who I absolutely adore) come to visit for the May long weekend and this has brought back the feelings of being secluded from the normal population. Carrying around my pill case(a 18 year old carrying around this many pills ALWAYS draws attention), stumbling over my words, and having problems coping with my pain has brought this feeling of being the odd girl out back to the surface.
Having something that makes you stand out is something that we are encouraged to celebrate in today’s society, but I have found that theres always that little voice inside your head that wishes that you could just be the same as everyone else.
I know that I’ve only hit a bump on the road in the grand scheme of things, but it’s still a learning experience that I hope will give me some new insight to this hectic life of a chronically ill teenager.
Well today I had my pain management appointment and as usual I had a list of questions about a mile long, but my most burning question was what do I have? What condition/disorder has ravaged my body these 6 years… Is it a headache disorder? Or maybe a pain disorder? At my pediatric pain clinic they labeled this as a “maladaptive pain condition” but do a quick google search and you get nothing! A few odd web pages but nothing concrete, and I know that if the Internet doesn’t have anything it’s probably a non existent condition. As she officially diagnosed me with chronic daily headaches I see this as a bitter sweet moment. What happens next? This diagnosis that I have held on to for the past two years is no longer relevant…Will a new diagnosis change my treatment plan? Will this mean a reduction in my pain? Who knows, because chronic pain is one giant labyrinth and no one has a map..
I’ve heard a lot of people out there who’ve gotten sick compare their situation to a blessing, as it has changed their lives for the better, even though they’ve had some rough patches along the way. On the other side of the coin you hear the people who purely think that them becoming sick is a “curse”.. Not in the witchcraft sense, but, in how it’s made their lives a living nightmare. Now I must say, at different times over the years I’ve found myself in both situations, but I’ve come to a realization.
Becoming sick was not a amazing thing for me, if I could have prevented it I would have.. No questions asked, but I’ve also gained valuable knowledge from being sick so long. So which is it?
Neither. I believe that this was not a blessing or a curse, but a lesson. Something that I will learn from, suffer with and hopefully grow with. One of my favorite teachers has ways said “learning should sometimes be uncomfortable” and it’s true. This learning experience has not been a walk on the beach, nor has it been the happiest days of my life, but I’ve also had invaluable experiences that I know I would have never had, without this condition.
Do you consider your condition a blessing, curse or a learning experience?
As I prepare for my upcoming pain clinic appointment, I decided to go through and try to find all of my past medications I’ve tried.. The list is long my friends and I know there’s way more, I just didn’t record them!
Do you have a long list of failed medications like this one?
Please go check out the original post! It’s amazing
As I read your latest blog post this morning while waiting for my high school bus, I was close to tears. The repeated question”How do we do this? How do you live” is something almost all chronically ill people can relate too. The thought of living the rest of your life in a state of Ill health is daunting as is, but then having to fight for your rights as a patient, a human being, along with trying to retain your health is a massive juggling act that absolutely no one deserves.
I have a similar answer to you K, to this ever daunting question. While I was seeing a neurologist way back in 2008, she didn’t believe in the scale of my pain, so time and time again she refused any type of treatment and just told me “You could be like this the rest of your life, you need to learn how to deal with it.
As you can imagine, when she told me that I was not a happy camper, but I have found out that, her making that statement has forever changed my life. I know that I have No other option other than to go on with my life, with the occasional down days..
But I’m not perfect, I often loose sight of the goal and I lay in bed for days on end, and I let my pain take over.. But having the support from my family, friends and online community can always give me the boost to get back on the wagon!
Again, please check out their original post!
30 things about my migraines that you might not know!
- The illness I live with is: Maladaptive pain disorder( but many doctors have told me I have chronic migraines)
- I was diagnosed with it in the year: 2011
- But I had symptoms since: 2007
- The biggest adjustment I’ve had to make is: my social life/ my education
- Most people assume: I’m looking for attention
- The hardest part about mornings are: convincing myself to get up
- My favorite medical TV show is: none: Greys Anatomy
- A gadget I couldn’t live without is: my cell phone.. it keeps me connected to my friends when I get really sick
- The hardest part about nights are: when I just cannot sleep
- Each day I take __ pills & vitamins. Each day I take 5 pills and 2 sprays of a prescription medication, then if its very bad I take a wafer pill just to add to the fun!
- Regarding alternative treatments: Physio, massage, acupuncture and now on to the Ceflay anti migraine machine!
- If I had to choose between an invisible illness or visible I would choose: 100% visible. If people believed that I was in constant pain, half of my daily battle would be beat.
- Regarding working and career: Still a high school student. Struggling.
- People would be surprised to know: That I volunteer as much as physically possible
- The hardest thing to accept about my new reality has been: Loosing so many friends, and having so many authoritative figures doubt my illness
- Something I never thought I could do with my illness that I did was: Complete high school. I graduate this coming June
- The commercials about my illness: make me frustrated. They make all my peers think that all headaches can be cured from taking advil. NEWSFLASH. They can’t
- Something I really miss doing since I was diagnosed is: being able spend a lot of time with my friends
- It was really hard to have to give up: my old life
- A new hobby I have taken up since my diagnosis is: blogging!
- If I could have one day of feeling normal again I would: Drink lots of lattes, do lots of shopping with a lot of my friends, go out to dinner with my family then round off the evening with going to a movie theater.
- My illness has taught me: I am a lot more mature than most adults I’ve met
- Want to know a secret? One thing people say that gets under my skin is: when people tell me they “would die” if they had what I have
- But I love it when people: understand, and treat me like a normal 18 year old
- My favorite motto, scripture, quote that gets me through tough times is: ” Pain. You just have to ride it out, hope it goes away on its own. Hope the wound that caused it heals. There are no solutions, no easy answers. You just breathe deep and wait for it to subside. Most of the time pain can be managed, but sometime the pain gets you when you least expect it, hits way below the belt and doesn’t let uo. Pain. You just have to fight through, because the truth is you cant outrun it… and life always makes more” Greys Anatomy
- When someone is diagnosed I’d like to tell them: Please do not feel alone. Start looking for others like yourself, I promise there is someone out there who has a similar condition.
- Something that has surprised me about living with an illness is: How rampant discrimination is.
- The nicest thing someone did for me when I wasn’t feeling well was: My mum brings me flowers quite frequently, which I greatly appreciate
- I’m involved with Invisible Illness Week because: Well, I just found this online, but I will definitely be participating in invisible illness week next year!
- The fact that you read this list makes me feel: like someone cares
Original posting: http://thatmword.com/post/16590346268/30-things-about-my-migraines-you-may-not-know
Well, I’ve been trying my best to use the cefaly anti- migraine device as the instructions directed me to, two times daily, but I have found it to be a tad difficult for a number of reasons..
1) I find fitting 20 minute segments into my life to be quite difficult.. And tiwce daily makes it even harder!
2) I find the therapy itself to be quite painful. Now I know the reading states that some people can be very sensitive to this system, and I could be one of these people.. I find it makes my head feel itchy, but then over sensitive to touch.. its very odd!
3) Another note on the 20 minute settings.. I honestly can’t handle that much! It’s way too long for me to deal with the pain inflicted by the device itself!
4) But I am holding out hope! This still may help me, so I am going to continue using this device until I can no longer grin and bear it! I am going to put 6 months into this like it was recommended.. or until I can no longer deal with it!
More updates to come!
Yesterday I faced a daunting task.. Approach a teacher who seemed to be on the fence regarding accepting my disability.. Well today I can say with clarity I know where he stands now!
I have formal adaptations on my school file which states a couple things.. One is that I must have reduced work: “The quality of the work will not reduce if the quantity is reduced” Seems like a simple theory right? Apparently not..
So sadly early in this semester one specific teacher, who we will call Mr. Discrimination, who was informed on my adaptations. Many assessments had gone by with no adaptations made, so I just struggled to complete all of them.. First assessment comes along. Nothing. We send a friendly reminder. Second assesment comes along, again nothing. So on each of these assessments I had to take his job and reduce them myself. His response? Give me ZEROS for each question reduced.
So yesterday I go to him, asking why? His response? calling me many many rude and ignorant names.. telling me I was taking advantage of my situation
So I left feeling horrid. Next stop. Administration.
So this morning, he took me out into the crowed hallway to [[[[[[[[SCARCASM ALERT]]]]]]]] “apologize” in front of my peers.
In the beginning he said he was wrong, but then quickly placed the blame on me. Blaming me for ruining his life… Being angry at me for taking this to the next level…
Well Mr. Discrimination I am doing this because you only apologized due to the fact I didn’t let you push me around.
I do apologize for leaving some pieces out.. But I’m still a little shaken up from the experience and some things are just to personal.