30 Things About My Invisible Illness You May Not Know

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30 Things About My Invisible Illness You May Not Know

Self-portrait of me with my migraine auras

1. The illness I live with is: Fibromyalgia, hypermobility syndrome, chronic migraines, asthma and hypothyroidism.

2. I was diagnosed with it in the year:
This is insanely hard to answer with a memory like mine and that many chronic illnesses. Jeez. Hypermobility Syndrome was 1992, which would have made the Fibromyalgia about 1997, chronic migraines were about 2000 or a little before, hypothyrodism about  2001 and asthma about 2007. Approximately.

3. But I had symptoms since: The hypermobility syndrome and fibromyalgia can be seen in childhood, just took a lot of tests and specialists to muck about with that. Migraines I'm a little iffy on myself since when I became aware that the menstrual migraines were migraines and didn't have the same symptoms or present the same way... well clearly they could be the really bad 'headaches' I had since puberty around that time. The migraines themselves occurred occasionally prior to my diagnosis with them right around the time I was diagnosed with FM, but remained episodic in nature (if you don't count the hormonal ones which at the time were not diagnosed) until 2000 when I saw my first neuro. So they were just more frequent when I was first diagnosed with migraines and chronic before I was diagnosed as chronic... ahead of the perceived schedule. The hypothyrodism actually was caught very quickly as the symptoms, I had assumed were FM, actually were pretty intense... really erratic heart rates, nasty leg pain and rapid weight gain. The asthma, again I assumed was FM and migraine medication side effects getting worse, was caught within six months of it progressing. Maybe it existed for awhile since I did brush off the symptoms for some time, but when I started persistently mentioning it... only took about six months for that doc to take notice.

4. The biggest adjustment I’ve had to make is: I have made many. I could say learning moderation and limitations as when I was young, that was a hard adjustment to make. I could say the compromises you must learn to make, as it is hard to learn your goals have to be different and ambitions less ambitious and careers discarded. But, no, those were hard, yes, but the most difficult adjustment is simply having to be in moderate to severe pain and understand I cannot do anything about it. That I have no medication for it nor will be given a medication for it. That I just have to be this way and somehow learn to function like this. The adjustment being the knowledge the pain will always be there and that I must mentally and emotionally learn to adjust to it because I have come to understand my limited capacity to function through it.

5. Most people assume:
If you can function one day you must be able to function the next. Like they have no concept of how pain affects one's ability to move, think, focus, concentrate and remember. Like other symptoms can not have a dramatic roll in that. Like you don't want to function every day.

6. The hardest part about mornings are: Becoming aware. I often wake up confused and groggy. If I don't have a migraine... I am in a pre-migraine state or have vertigo. Often have not had much sleep. I often wake up confused at what time it is and can just stare at the clock trying to understand what it means... and then what it means to me... and what day it is. It makes me late. And I have no sense of time even when I try to get moving. I move around like I am drunk. Slow and clumsy. Forgetful. if I am not utterly and completely prepared the night before for what I have to do in the morning, it can make me late. A full blown migraine? And I can be extremely out of it along with the pain.

7. My favorite medical TV show is: It was House. Can't say I watch one now. Not really my thing.

8. A gadget I couldn’t live without is:
My iPhone. I use it as a second alarm system, a back up alarm in the morning. I use it for reminders. I have a planner I am trying to get used to. I have pain trackers. Medication trackers.

9. The hardest part about nights are:
Painsomnia. When acute pain meets my insomnia and they merge together into a beast that cannot be conquered. A horrific thing. I'm on leave from work right now but this beast is not good when working. Painsomnia is something that is a torment if you are working... that intense pain knowing you will get little or no sleep and have to work the next day. You mood plummets like a rock. Lots of time for pain to contort your thoughts at night.

10. Each day I take __ pills & vitamins. (No comments, please)
- 5 types of pills and 3 (B12, D and Calcium) vitamins that I must take, as in doctor recommended... lots of vitamins and supplements I have and take on a weekly basis but not daily.

11. Regarding alternative treatments I:
Have tried plenty when i can afford to. Many are worth a go, some not worth a go. Depends on what is recommended.

12. If I had to choose between an invisible illness or visible I would choose: I have no preference. There is stigma with both sides of the coin. I understand the stigma with invisible illness comes a great deal with people incomprehension of not being able to 'see' how ill we are. Or 'see' pain. But with visible illnesses people treat people differently all of a sudden... like a cripple, like lesser than them, gawk at them, doubt there mental capacity at times just because they are physically disabled... and I sure there are even more on there. So we all have stigmas to deal with... I don't particularly have a desire to choose which batch of them I get.

Although I suppose I would choose losing a limb if offered that in trade... because while I think it would take awhile to adapt to the loss, I would, then I would still have the other limbs... and no other pain or illness to deal with, there would be an end to the process... just all the work put into dealing with it, adapting, physio, artificial limb, learning to adapt to that... then I would eventually be pretty functional again. The work would have results. Knowing my luck though I would have phantom pain or something. But assuming not, that would be the end of it.

13. Regarding working and career:
When i found a career I could do I thought finally I could hold onto something. Be functional in society. When my migraines went to daily I desperately tried to hold onto that despite the fact I knew the pain was too much, missed too much work, had all these short term leaves of absence, and my employer clearly wanted rid of me. But I wanted to hold onto it and be financially stable, and be a functional member of society and have self-worth. I had to come to terms I wasn't capable of it physically, mentally or emotionally. However, that doesn't resolve how someone survives the financial stability issues without it. Or if they can continue on long term leave... if not... then work it is... and how long can a person survive that when they know they can't?

me at work on 'Rodeo Day' where we all had to dress rodeo style... I don't do cowgirl style so this ended up being the only cowboy-ish had I could find and used it every year.

14. People would be surprised to know: That I have a Masters in Philosophy. Not many people know that. Given the job I ended up in. My chronic migraines were a factor in what made me decide I could not continue to get my Phd. But, yes, I do love the philosophy. It was a joy of mine. I think it would surprise people to know I accomplished something with FM and chronic migraines both being a factor.

15. The hardest thing to accept about my new reality has been: Right now it is just that the pain rules my day. I have to live in the small gaps it gives me. I have only small windows of time before it consumes me. The hardest thing to accept about that is that when that migraine pain kicks in, it is very hard to think and focus... brain function goes down hill. And I try to think of alternative work solutions and I became aware quickly this problem of untreated pain is too large that it limits all possibilities I have come up with. It is not like FM that can be worked around in different ways. Chronic migraines affects all things. I realize how hard it is to do small things in the house done, or one errand, or tiny things.... and I'm done... most people could get all their chores done and errands. And I realize my ability to function is so low... all the times I have in a day is moments in which to function. My reality is living in those gaps. And that is hard to know that is all I have right now... those small gaps.

16. Something I never thought I could do with my illness that I did was:
Years ago I went on a trip to Scotland and Ireland for a wedding. And obviously trips cause an increase in pain. But we went to this place in Ireland where a bridge spans from the mainland to an island, a walking suspended bridge. And you walk to it, walk across the swaying bridge and back and get a certificate to show you walked across this bridge... which is quite some distance up. My spouse and I decided to go check it out (forgetting it wasn't 1km but 1 mile, and not both ways, but just there, so a 2 mile walk) and not flat land, up and down hills. So I got there hurting. Crossed the bridge of vertigo fun. On the way back the FM pain really intensified so it took about four times as long to get back with me moving exceptionally slow and in agony. But I freaking made it and I got my certificate. And I still have it. And when I look at it and am not proud I crossed the bridge... I am proud I made the bloody walk. The Lyrica I was taking then helped a bit, not sure I would have made it at all without. People stared at me I was walking so slow... I was in that much pain. But screw them. They don't couldn't comprehend how someone who looked fine was walking so infinitely slow or why. All I care is that I made it back. It was a profound relief to just stop moving. I did it because I wanted to, even though I knew it would cost me... had not known it would be that bad, but I knew to some extent.

This is the view from the walk Back... trust me that bridge is very high and flimsy.

17. The commercials about my illness: Well they are pretty idiotic. People prancing around it fields and tossing their children about. Then... the long list of nasty side effects... and you're like, well, forget about some of those. Might want to kill yourself... so watch out for that, but you won't want to, because you will want to kill yourself. Maybe your liver will implode... so if you start to turn yellow... might be a bad sign. Side effects often include symptoms of what it is treating so that may be tricky to notice. And even if you avoid all the pitfalls... you won't be prancing around anywhere or lifting small children.

18. Something I really miss doing since I was diagnosed is: I miss going out for a few drinks with friends. I miss having a social life. I even miss silly things like being able to go on amusement park rides.

19. It was really hard to have to give up:
Always the things I wanted I suppose from life. The things that are most painful is when life doesn't meet expectations right? And you have to make those hard compromises because of pain. So I had to give up pursuing my academic career, which was harsh. Dealing with infertility was difficult and then understanding that maybe that was for the best. Then when I found a job I formed into a career being unable to function in it... has been yet another harsh reality. I don't particularly like being non-functional and dependent and not financially stable.

20. A new hobby I have taken up since my diagnosis is:
When i was younger with FM I began writing fiction a lot. I still do. I find it an escape to write about other worlds and other people. I publish ebooks under a different name actually now. I also picked up blogging... that was also just to get out my frustrations about my illness and to connect with others.

21. If I could have one day of feeling normal again I would: Leave the house, visits all my family and then go out and do something fun.

22. My illness has taught me: Empathy. If there is one thing I can do, it is see the other side of the coin. 

23. Want to know a secret? One thing people say that gets under my skin is: There isn't anything in particular the gets under my skin. It is usually people's tone.When they imply by their words that I should feel guilty about being ill or causing an inconvenience to others because of my illness, such that I should also take the blame and guilt for that. It gets under my skin because I do feel guilty that I cannot be what I want to be, and functional in all contexts, and 100% of who I am... so immediately I do feel guilty for being ill. And then I feel angry that they made me feel that way because I should be finding ways to work with my disability, not feeling crippled by it and 'if only I were 100% healthy' and they have no right to blame me for being ill. It is a horrible way to treat someone. And to be honest I have lost a lot of respect for people who have treated me so.

24. But I love it when people: Offer to help me out with small things that they have no idea are not so small for me. There are just things that are difficult when you are boggled down with too much pain. You forget things a lot and so having people there to remind you of appointments, or to take medication are awesome. A spouse that used to, when I drove, always fill my gas... as I ran out of it on more than on occasion. A spouse when I worked who always cooked supper without complaint because I was too exhausted from the pain of working and the pain level at the point quite high. A spouse who still does all the shopping. A mom who drives me to all my doc appointments these days. All these little things add up to some pretty big things.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't really have any. I sort of like 'This too shall pass' when I am in acute pain, like the 9 or even creeping higher and incapable of moving or thinking... I often repeat something over and over and over again to try and block out the fact I am rolling in agony. And that is one, but it is not something I am fond of at any other time because of course this too shall pass... into another migraine and another and another. haha. I also like the saying "The world breaks everyone, and afterward, some are strong at the broken places." Because to me it is a very true statement of fact... we all suffer and survive some battle, and carry those scars and it is those scars that make us stronger isn't it? Sort of like it is better to have loved, and lost than to have never loved at all. I like to think the many years of chronic pain makes me strong in my broken places, it is just that so much pain makes many broken places and many more after it. So it is a hard and constant battle.

26. When someone is diagnosed I’d like to tell them: That is difficult because FM is so varied for people. I like to tell them that it is not necessarily disabling. That it won't necessarily become so. That although it seems pretty bad to begin with one can cope with it once you begin to learn your limits and moderate your lifestyle, but it isn't easy and you will mourn for the person you were and feel guilty about what you feel you cannot be. It requires a lot of adaptation and for that time period the adjustment is brutal but afterwards you begin to settle into it and you can cope with it and exist within those parameters. However, sleep is a vital thing to be taken care of. Other treatments are hit and miss so do what works. And don't do what doesn't work. A lot of medication isn't necessarily a good thing. No medication isn't so grand either.

When it comes to chronic migraines I aim for realistic. Realistically treatment is difficult when it reaches the chronic state. There typically are no immediate or easy solutions. Preventative medications take about three months of a trial to even know if they are doing anything, aside from side effects, so as you can imagine, given there are about a hundred of the damn things, and combos... that if the first does not work, or the second, or the third, of the fourth... it is just a matter of keep trying. It takes time to find something that will decrease frequency Or intensity Or both. Triptans are the most effective acute treatment, if they work for you. Otherwise there are NSAIDs, like toradol, and opiates, which the last being iffy for neuros to prescribe. Then I would say remember too much of a good thing... is a bad thing with migraines. As in everything you take to treat a migraine if taken too often, rule of thumb more than three times a week, could cause rebound headaches... the swiftest being opiates. Also included are OTC medications, which are also bad for rebound headaches and most people do not even realize it. Rebound headaches will cause a constant headache, strong, sharp headache in addition to the migraines. If someone isn't told this... it can in fact be the cause of their chronic migraines. And the only way to boot that, is to go off all medications... and that isn't a pleasant thought... so better to just avoid that one. So, we often juggle medications, triptans and one would hope a rescue medication (NSAID or painkiller) so that we do not go overuse either and still can treat the migraines... assuming your neuro prescribes more than just the triptan, which they do not always do. Also journal your migraines early so you can catch the triggers, Before you have so many migraines it seems like existence is a trigger.

27. Something that has surprised me about living with an illness is: That it is surprising what a person can endure and cope with. I struggled a great deal with FM when I was around 18-19 and when I got through that it was like I had a real Victory. And we don't really get those with chronic illness. But I had. I had figured out how to mentally and emotionally cope with the pain and after that it was easy to be me. It was easy to let myself laugh, to just feel free to joke around and be me, within the limitations I had modified for myself... knowing I needed to not over-extend myself as I had. And it was freeing. I had the same pain, same flare ups during summer jobs which were very nasty, same symptoms, but I coped with it all immensely better. And then along come the migraines getting worse and worse as each year passes, symptoms getting worse, persistent migraine auras, and migraine associated vertigo. Then years of the migraines being daily. That pain level surpassed my ability to cope, all strategies I designed I used, but they faltered under the constant onslaught of acute pain and migraines lasting over a week straight, and sleep deprivation. People would ask me at work, because I still worked (missed a too much, yes, had a leave every year and half it seemed... but still worked... just not much else at all in my life)... they would ask me 'How do you do it? I can't imagine working with that pain every day?' And I think of all the pain... I am not sure how I survived, except survival was the only goal. I was no coping very well, but I was surviving. So what surprises me most is that we will do anything to endure, to survive... to function... even though people think the exact opposite.

28. The nicest thing someone did for me when I wasn’t feeling well was: My spouse does nice things all the time. But the best story I have is from a complete stranger and I think it is the nicest thing because he didn't know me at all but did me a huge favor... and that is the best random act of kindness ever. I was working at a hotel at the front desk on Christmas Eve late shift. I got an acute migraine, with intense auras and vertigo. I took my abortive, but it was a pill, and at that time I used to get horrible bouts of uncontrollable vomiting with migraines, especially with vertigo. Still do with vertigo sometimes... it is the intensity of it. Anyway, I began to get sick and sick and sick, over and over. The pill never had a chance. And I had no more, and certainly could not take another right away, because maybe some had gotten in there. I didn't know. Then I started getting sick the other way, because diarrhea was my new migraine symptom and often came with these serious vomiting bouts. So then real quick I was getting quite ill. Shaky. I could barely stand, let alone function. The pain was massively acute. It was clear to my boss... who was helping me out front every time I had to get ill, that I couldn't work. She was a very understanding boss. She phoned everyone she could. No one could come in. I knew it was going to be hell for me. I wasn't sure how I was going to make it to be honest. I had trouble just standing my legs shook so much. But I tried my best with the customers. tried to smile and everything, even though apparently I Looked ill. Pale and sick. Then... in comes a stranger to me but known to my boss. He used to work there a decade ago. They get to talking as I lean for support against the counter. She mentions me and why I look as I do. And he says he is willing to take the rest of my shift... on Christmas Eve even though he is a Guest and has no clue who I am and certainly doesn't need to. I was stunned, but she agreed and next thing I knew they were packing me out the door and sending me off with her muttering worriedly about how I could not walk straight. That was the nicest thing someone has ever done for me and one nice boss as well, since she helped me out that entire time. I had to get a new job, my doctor specifically told me so. Said I could not work shift work and that it was causing my migraines to become much more frequent and severe. He gave me a painkiller temporarily until I could get a new job, because I told him I could not just quit without having another... I'm not irresponsible. And my boss understood why I had to leave but said if I ever needed to come back she would hire me in a heart beat. It is rare to find a boss like that. My next employer I had a great boss like that, until they changed management then not so much.

29. I’m involved with Invisible Illness Week because: I believe in raising awareness for FM and chronic migraines. I also feel it is important that people understand how these and other invisible illnesses impact the lives of people. And how stigma can be quite damaging.

30. The fact that you read this list makes me feel: Delighted you made it through all that. Bravo!

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