30 Things About My Invisible Illness

1. The illness I live with is: Stiff Person Syndrome(yes it's real) among others but this is my main one

2. I was diagnosed with it in the year: 2013/2014

3. But I had symptoms since: 1996

4. The biggest adjustment I've had to make is: learning I can no longer do the things most people take for granted, I try but end up making myself go into spasm and then get frustrated

5. Most people assume: I'm not the same person....although my mobility is greatly reduce my personality is still the same

6. The hardest part about mornings are: wondering if I will be able to get out bed or will this be the day I become bedridden (a great fear of mine)

7. My favorite medical TV show is: don't have one....I use to watch medical mysteries hoping I would see a story that was like my condition and only found the show on Stiff Person's after my diagnosis.

8. A gadget I couldn't live without is: my tablet for the days I can't move well it gives me something to do, and my phone in case I need to call for help

9. The hardest part about nights are: trying to find a comfortable way to sleep... and once asleep waking up because I am stuck in that position and need force my body to move to another position

10. Each day I take 12 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: would be willing to try some options if I felt it truly would help me, but not because someone read something somewhere I like treatments back up with actual facts.

12. If I had to choose between an invisible illness or visible I would choose: invisible so I can trick myself and others into thinking I'm fine (even at times when I am not), except when people stare at me using a handicap space on my bad days, on the outside I look fine but on the inside my body would tell you a different story

13. Regarding working and career: I never realized how much work defines a person in our society until I was unable to work

14. People would be surprised to know: the odds of this disease is 1 in 1 million, when you put that in prospective that means only 35 people in Canada have this... if they are lucky to be diagnosed

15. The hardest thing to accept about my new reality has been: losing my independence and accepting help I was always the one to help people and now that I need it I am not comfortable asking'

16. Something I never thought I could do with my illness that I did was: still find happiness and being joyful each day (once I got over the anger)

17. The commercials about my illness: do not exist due to it being so rare

18. Something I really miss doing since I was diagnosed is: going for walks with my husband, swimming and going out dancing

19. It was really hard to have to give up: cooking up a storm and spontaneously going out

20. A new hobby I have taken up since my diagnosis is: I have always been a voracious reader and so glad that I am(my favorite hobby), but for new that would be my blog it helps me express how I am feeling, the highs and lows

21. If I could have one day of feeling normal again I would: bend down and putting lace- up shoes on (have not worn lace up shoes in years unless Chris is home to help me)....then run away 

22. My illness has taught me: how quickly life can change and how for granted we take each mundane and simple task we perform daily.

23. Want to know a secret? One thing people say that gets under my skin is: how they think they know some magical cure, even with not knowing anything about my illness but a name, and it bothers me how others laugh when they hear the name Stiff Person Syndrome. People it's not funny, educate yourself then if you still find it funny tell me so I can laugh when I'm trying not to scream when a spasm hits.

24. But I love it when people: call me or even better call and tell me they are coming over for a visit

25. My favorite motto, scripture, quote that gets me through tough times is: I shall pass through this world but once. Any good therefore that I do, or any kindness that I can show any human being Let me do it now. Let me not defer nor neglect it. For I shall not pass this way again.

26. When someone is diagnosed I’d like to tell them: I'm the only lucky person in Manitoba to have this but I tell myself to "stay strong" and would say the same to them.

27. Something that has surprised me about living with an illness is: how people's words and actions are so different. I think I always knew this but now the reality is hitting home .

28. The nicest thing someone did for me when I wasn't feeling well was: whenever I am having a bad day and my husband makes me smile through my tears like today when he started blowing on my back when I asked him why he was doing that he said "I'm trying to be the wind beneath your wings". How lucky can a person who is ill be with support like that.

29. I’m involved with Invisible Illness Week because: To bring awareness to a crippling disease 

30. The fact that you read this list makes me feel: grateful that you care to have a better understanding what life is like not just for me but for others with any type of long term illness you may encounter in your life.

Don't Judge Someone On Their Appearance

The misconception of looking fairly healthy to a world that bases judgement on looks.  I know people say we are not that shallow but as sadly that statement may sound it is true.  I was guilty of this myself, how many times did I see a person pull into a handicap space and hop out and I would think to myself hmm someone with a true disability is not with you today but let's use that wonderful handicap placard... feeling lazy today?  Like a twist of fate I'm now one of those people that other stare at.  We all do it.

The other day I was feeling fairly good so I ask my husband to get our laundry basket out before he left for work and I would try and do a load of laundry.  He did not want me to as he knows I have difficulty with the front loaders in our building but I was determined.

 Down I went loaded a washer and felt good so came back up and got another load to take down.  When I went back down close to the time it would be done I took my book with me to read while I waited.  As I sat, next to me an older gentleman in the chair beside me was talking to another elderly person in the laundry room.  I see my washing machine is almost done and went to get up as I did so my legs started to give out on me and I staggered as I got up and grabbed the machine closest to me to try and steady myself.  I could tell from the look on their faces they thought I was drunk.  As always I right away went into defense mode and explained I was not drunk I have a muscle disorder that makes my body give out on itself at times.  A moment of silence ensued finally the older gentleman piped up and said but you look so healthy.  As anyone who has an invisible disability I smiled and said I know funny how looks can be deceiving.   They both then began to ask about my illness which was sweet and I explained as best I could. As the conversation was ending the older gentleman said funny we are older and think here is a young person who can help us and yet we should be helping you.  I kindly declined their help but another lesson learned even to an older person never judge a person by their appearance.

I hope you never judge a person again by appearance, you never know what is going on inside, we don't all wear a sign that there is something wrong.  I know I have learned that lesson myself the hard way, I hope you never will.

Shh I Am Having An Affair

Shh I am having an affair....you know the one that most working people who are sitting at their desk, standing at a counter or doing any type of manual labor at work are dreaming about.  I used to dream at work about having this affair too....it's with my couch.

Any person who is ill with a disabling condition will always have the people who call and ask what you are doing and you say " lying on the couch not doing much",  either get the responds "I wish I could do that" or the opposite "maybe that is why you are having such trouble you need to get moving".  You know what you are right I/we love spending day after day lying around removing ourselves from society, having fun, earning a living. (the list could go on and on), but I prefer to waste my days rather then moving, quit judging me lol.

I will be fair to those who are not living the life I now myself find myself in.  A healthy person thinks I would love a day just to lie and do nothing it's great for a mental health day (we all stole a day or two from work for those days, many still do and if you don't you should) .  But now put yourself in an ill persons body doing that day after day knowing that no matter what you tell yourselves this is all you are capable of doing today.  Maybe I/they will get lucky and have that one day where I/their bodies become able and I/they push themselves and regret it for the next week or so.  

How often when you get the flu or cold did you spend a day or two lying doing nothing? Moving well that only makes you feel worse!  But finally you tell yourself get up and get moving you can't stand lying around anymore, an ill person does not have that option.   Next time all the wonderful people in my life get sick and cannot move but finally that day comes back when you finally feel well enough to get up again, stop and listening to your mind telling you to get moving but your body won't move and then tell me how lucky I or others dealing with an illness has it.  We will trade with you any day you would like.  Speaking for myself I'll even let you keep those days I know I'm very unselfish you're welcome.

As for my couch I would like to break off this affair, even though you are kind to my aching body, soft, warm and allow me to go brain numb watching daytime TV.  I have decided after almost a year of our affair it needs to come to an end,  it was fun at the beginning but you have become my enemy you need to get out of my life now....no...okay you win... maybe tomorrow.

Bad Days

Having a bad day today.  When I woke up this morning I could barely move, my entire body from head to toe was so rigid it took awhile to force my body to move so I could try and get out of bed.  Thank god my husband was home he need to help me out of bed and to walk to the bathroom, I would have been unable to do it myself.  This condition can be cruel you  can be fine one minute and the next your body freezes but yet at the same time your muscles are twisting.  How to describe it... everyone has had a charlie horse  now picture your body having a charlie horse from head to toe.   Unlike a charlie horse however imagine not being able to stretch it out or massage it as that will make the pain come on stronger and last longer .  That is the best way I can describe what is happening when a person with SPS is having an attack.

The other problem I'm having today we live on a main street with lots of traffic, near a hospital so the noises from sirens, cars honking at each other and the constant beep, beep, beep of snow plows clearing the snow covered streets are causing my muscles to spasm and I am unable to calm them down.  I don't know why noise causes the spasms to come on strong and seems to never want to stop.  I have to wear earplugs on days like this, or I will sit with my headphones that have noise reduction capability and listen to music just to try and help my body to relax.  I have yet in my research to find a reason for this, they know unexpected noises can trigger spasms but as to why they cannot figure it out. 

It's hard to be a prisoner in your body,  especially a person like myself who always did whatever without giving it a thought.  Now when I do go out I have to plan it like a military strategic  plan, and I know when going out I cannot do anything but basic needs if we have a hope of making it out the door.   I can only plan on one maybe two tasks before we need to head home.  Gone are my days of spending a whole day out and about and still have the stamina to go out at night too.

I have told my husband and friends I wish sometimes my mind was failing along with my body it can be another cruel twist of fate when your mind is perfectly fine but you can no longer do the things you tell yourself you can.

The other night watching a movie I wanted to get up and get a drink I stood up but I could not move.  It's like being a child learning to walk,  I made it to my feet but I could not get my leg to move my husband told me he would go for me but I refused (I can be very stubborn) I also still believe if I walk it out I'd be fine (denial is a constant battle in my mind).  It took me 10 minutes to walk from one room to another that should take me maybe 20 seconds.  The frustrating part is my husband had to walk behind me like you do when your child is learning to walk.  He held me by the shoulders and kept me steady for had he not,  we both know I would have fallen down like a plank of wood, another cruel twist to this condition is our bodies don't have the defenses to brace ourselves if we do fall, we go straight down which is why so many break bones some can have such violent falls and if their muscles are spasming  you can also rupture muscles. 

Not pleasant....just a few examples I thought I'd share again for a better understanding of what it is like for me living with Stiff Person Syndrome.  Everyone has different experiences with this condition which can also be frustrating living with SPS, what work for one doesn't necessarily work for another person.

Rate Your Pain From 1 - 10?

How often do you get asked rate your pain on a scale from 1 to 10?  When you are a person who does not suffer from a chronic/terminal illness this scale has a total different meaning.  Most would rate themselves somewhere between a  four or five when they get the flu or a cold, and as they get better the number goes down. 

For a person with a chronic illness the scale is completely different, most will never again have their scale go below  4 or 3.  My girlfriend suffers from Fibromyalgia and we often talk about what we read anything that may help one another and just lifting each other up on bad days.  She one day asked me where I would rate my pain based on the Wang-Baker scale?  When I asked her what she was talking about she said "you know the scale when you are asked rate your pain from 1 to 10?"  So I said on average from a 4 - 5, not realizing how far off I was. To a healthy person with the flu or cold I was rating myself pretty good, to a person who can no longer dress herself some days, or lift herself up from a seated position, or stand for long periods of time no wonder doctors did not see how bad I really was.  Doctors are basing their assessment of pain from their patient when it is possible that their patient has never been explained just what they mean by this scale when they ask.  Most people would rate themselves somewhere in the middle it's human nature.

My advice to anyone  suffering and if you did not know the true meaning of this scale prior to reading this like myself my advice would be to take a copy of both these scales with you to your next appointment and discuss your rating with examples, maybe then a lot of misconceptions and confusion could be avoided.  The medical profession needs to understand that everyone's pain threshold is different so a lot of people may be off the mark with their rating just like I was. Too if people have been suffering for a long time that again would make a person rate themselves lower then the normal population, the mind has an amazing ability to make you think you are doing better then you really are.

 THE PAIN SCALE

0  –  Pain free.

Mild Pain  – Nagging, annoying, but doesn't really interfere with daily living activities.

1  –  Pain is very mild, barely noticeable.  Most of the time you don't think about it.

2  –  Minor pain.  Annoying and may have occasional stronger twinges. 

3  –  Pain is noticeable and distracting, however, you can get used to it and adapt.

Moderate Pain – Interferes significantly with daily living activities.

4  –  Moderate pain.  If you are deeply involved in an activity, it can be ignored for a period of time, but is still distracting. 

5  –  Moderately strong pain.  It can't be ignored for more than a few minutes, but with effort you still can manage to work or participate in some social activities.

6  –  Moderately strong pain that interferes with normal daily activities.  Difficulty concentrating.

Severe Pain – Disabling; unable to perform daily living activities.

7  –  Severe pain that dominates your senses and significantly limits your ability to perform normal daily activities or maintain social relationships.  Interferes with sleep.

8  –  Intense pain.  Physical activity is severely limited.  Conversing requires great effort. 

9  –  Excruciating pain.  Unable to converse.  Crying out and/or moaning uncontrollably.

10 –  Unspeakable pain.  Bedridden and possibly delirious.  Very few people will ever experience this level of pain. 

Wang-Baker scale:

My days are from a 7 -8 and I often have days that can be a  9 heading into 10 because I can't get out of bed.  When my illness 1st started I was rating myself correctly but for the past few years I should have been much higher. How about you?  Are you rating yourself correctly?

Support System

If you want to find out how strong your relationship is get really sick (kidding) I don't wish an illness on anyone, but trust me when I say this. 

I am one of the lucky ones, I have read or seen in my own world people struggling with being ill and that one person you think you can rely on turns away from you.  I think back to my sister who passed away and can only think of her with an aching heart knowing that her husband was one of those that turned away.  I cannot imagine how hard it must have been for her. 

I have a wonderful husband.  I cannot stress how important a support system is when you are chronically or terminally ill.  If you are one of those struggling with dealing with a person who is ill in your life, spend a moment and think of yourself in their place there are no guarantees it can't happen.  Not one of us wishes our lives to be turned upside down , but those who you love and watch decline are life lessons to you.

If you don't have a spouse, I hope you have a close family member or a good friend who you can turn to.  For anyone who is supporting someone who is sick I urge you to think of ways to support that person, my lesson from watching my sister and now me here are some do's and don'ts of my own personal advise I would like to pass on:

I have learned laughing truly is important.  Don't wallow in self pity for long...you won't help yourself and others are liable to turn away.  Having a bad day pick up the phone if you are alone and talk to someone you know will pick your spirits up.

 Go to appointments with the person whom you are taking care of/ if you are not directly taking care of them but know they need support offer to go with them they may be reluctant but by showing compassion and they are comfortable in knowing you truly care the support will mean the world to them.

Do not trivialize their illness because you are not comfortable dealing with it....let that person know  you would be surprised to know some of the thoughts you have we have too because of the unknown.

Allow the person to cry, it is not a sign of weakness or of giving in.  Sometimes just like when they were healthy crying releases pent up anger, frustration, confusion and even joy. 

Even if you know your friend or family member has a spouse do pick up the phone once in awhile, send a quick email anything to let that person know they matter in your life.  We all get busy in our lives when I was still healthy I was guilty of this myself but I also made an effort to call my sister a few times a week just to say hello.  I can place myself in her shoes now and realize how important that call was to her well-being , it can be lonely sitting at home all day especially if you have an illness that prevents you from going out.

Don't think because we can't go out today doesn't  mean we never can. Some days are better than others  and we may not be able to go out for hours but even a short outing can be a big event now to someone who is unwell. And makes a world of difference to someone's mental health.

If we can't go out offer to come over and visit.  Just remember to not pass judgement on how a place looks if they have no one at home to help them.  I have never heard when someone has passed away did you see their home and how messy it was?  No one really cares in the big scheme of things.:-). 

If they have children offer to take the kids out for the day.  I don't have little ones but I know my sister loved it when I came over and either played games with her boys or took them out.  I use to call and offer to make dinner and have a game night with them at their home....I know how much again that meant to her.

I could go on and on but will leave it at these few for now but I know I will write about this more as I continue my meandering thoughts. ;-)

Finally I am Diagnosed

I have my appointment with my new neurologist the one that is more specialized in rare muscle disorders that my previous neurologist.   I have waited another 4 months from my last visit for this one to take place.  I finally hear the words I have been waiting for... you have Stiff Person Syndrome.  It took a minute for it to really sink in,  I am not crazy?  No denying it's real that I am not a  hypochondriac. He wants to re-test me for GAD 65 as he fears with all that happened it was done incorrectly, same with my NCS/EMG as he watched my leg muscles non-stop twitching.  He has no doubt that is what we are dealing with.

He starts by asking me to describe what I am experiencing:

I can no longer walk for long I start to tremble and my legs start to give out on me.
I can no longer do basic household chores.
I can no longer take baths I can't get into a tub without falling down, my brain knows what my body should do but I can't get my body to move the way it should
I am having trouble swallowing, again my brain knows what it should do but I can't get the muscles in throat to do the action, the only things that gets them working again is to drink water really fast to get them to work the way they should
I cannot sit upright for long periods of time the muscles stiffen up so bad I can't move
I cannot bend forward as the muscles start to spasm and push against my rib cage
I cannot stretch again my whole body feels like an electrical charge is going throughout

The list could go on...

He said from the moment I walked he saw my legs were not bending like they should.  He tried to get me to walk a straight line like they do on a sobriety test and I could not do it.  Even trying to start by putting one foot in front of the other I started to fall, and as I tried to lift my leg to move it in front of the other it was like walking on a balance beam only I kept falling off.  I can no longer lift myself on my heals or the tip of my toes.  Having me stand with my arms out and eyes closed he had to grab me as I started to fall backwards.

You can not believe the validation I felt at the moment as much as I would have preferred some other outcome, to wait 17 years to hear the words that you really have an illness I think the weight of the world lifted at that moment.

I am on a low dose of diazepam for now until my next NCS can be performed but at least I know what I am dealing with.

As always with our wonderful medical system is I have to wait until April for that test but the great thing about this wait is he is the one who is going to preform it.