What Living with MS Feels Like

I came across this article recently and think it's a great way to describe what it's like living with MS. I am not entirely sure who wrote it and the only information I have is that it may have been written by a woman named Cheree. So, thanks Cheree, for putting this together!     

When We Say We Can’t do Something Because We don’t Feel Well, Put yourself in Our Shoes By Using The Examples of our Symptoms Below…

- Painful Heavy Legs: Apply Tightly 20 LB ankle weights and 15 LB thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?

- Painful Feet: Put equal or unequal amounts of small pebbles in each shoe then take a walk, if we are mad at you we would prefer needles to pebbles.

- Loss of Feeling in Hands and/or Arms: Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful stab yourself in the arm.

- Loss of Feeling in Feet and/or Legs: Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk without looking like the town drunk. Hopefully you won’t fall down.

- TN (Trigeminal Neuralgia): Take an ice pick and jam it into your ear or cheek whenever the wind blows on it, or a stray hair touches it. If you want something easier to do, get someone to punch you in the jaw preferably daily.

- Uncontrollable Itching: Glue or sew small steel wool pads to the inside of your shirt, pants and undergarments wear them for an entire day.

- Tingling: Stick your finger in an electrical socket – preferably wet.

- Tight Banded Feeling: Put 12 inch wide belt around you and make is as tight as you can and leave it there for the entire day. How ya’ breathing?

- Shots: Fill one of our spare needles with saline solution, saline won’t hurt you, we would love something worse but don’t want to end up in jail. Give yourself a shot everytime we do our shot.

- Side Effects From the Shot: Bang you head against a wall, wrap yourself in a heating pad, wrap your entire body with an ace bandage tightly then finally treat yourself to some spoiled food or drink.

- Trouble Lifting Arms: Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.

- Spasticity: Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves then go dancing.

-Poor Hearing/Buzzing in Ears: Put a bee in each ear and then put a plug in each one…Bzzzzzzzz

- Balance and Walking Problems: Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now get up and see what happens.

Urgently Needing to Pee: We put a .5 liter remote controlled water bag and drip tube in your pants, we point out 2 restrooms in a crowded mall, then we tell you that you have 30 seconds before we activate the water bag (by remote control) to get to a restroom. Just for spite we may make that 20 seconds without telling you.

- Bizarre and Inexplicable Sensations: Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day, heck all day would be good too.

- Pins and Needles: Stab yourself repeatedly with needles all over your body or better yet….Get a very large tattoo in your most sensative area.

- Dizziness (Vertigo): Get on a gently rocking boat all day and all night and take several walks around the deck with your eyes closed.

- Fatigue: Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel. Please do not compare MS fatigue to you being tired from only a few hours of sleep – it’s not the same at all.

- Cognitive Function (Brain Fog): Take a liberal dose of sleeping pills but stay awake. Try and function properly and think clearly. To make it even more real without killing yourself of course, take the sleeping pills with a small sip of wine.

- Bowel Problems: Take a 4 day dose of an anti-diarrhea medicine followed directly by a 3 day dose of stool softeners for a minimum of 3 weeks, at the end of 3 weeks sit down on a hard uncushioned chair and stay there til tears appeared.

- Burning Feeling: Make a full pot of boiling water and then have someone fill a squirt gun with the boiling water and shoot it at yourself all day long. However, you can give us the pleasure of shooting you instead…optional of course.

- Intention Tremor: Hook your body to some type of vibrating machine try and move your legs and arms…..hmmm are you feeling a little shaky? You are not allowed to use anything fun for this lesson.

- Buzzing Feeling When Bending Our Heads to Our Chest (L’Hermitte’ s): Place an electrical wire on your back and run it all the way down to your feet, then pour water on it and plug it in.

- Vision Problems (Optic Neuritis): Smear vaseline on glasses and then wear them to read the newspaper.

- Memory Issues: Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those things.

- Foot Drop: Wear one swim fin and take about a 1/2 mile walk, nothing else needs to be said for this one, you’ll get it.

- Depression: Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one or more of the animals and when you come back the next day you come in while they are putting her/him asleep.

- Fear: Dream that you have lost complete feeling in your feet and when you wake up wiggle your feet, just so happens they don’t move. Think about this every night wondering whether something on your body won’t work the next day when you wake up.

- Swallowing: Try swallowing the hottest chili pepper you can find.

- Heat Intolerance or Feeling Hot When it’s Really Not: You are on a nice vacation to Alaska. It’s 35° outside and 65° inside. Light a fire for the fireplace and then get into it. Once you have reached about 110° tell me how you feel, even a person without MS would feel bad, now add all of the above symptoms

Welcome to our world. 

Then Finally…

After subjecting yourself to the items above, let everyone tell you that you are just under a lot of stress, it’s all in your head and that some exercise and counseling is the answer.

Cheree’s Added Note: This may sound harsh or exaggerated, but trust me when I say that it’s all true. MS is most times considered the ‘invisible’ disease because alot of us with MS can walk around looking like we’re ok! What you don’t see are the rough times spent at home, alone, at night, when MS causes us the most pain. The next time you see someone with a chronic illness and see them smiling, just remember that they’re probably dealing with a whole lot more than the eye can see…and let them know that you care! 

2010: Exciting Progress Made in MS Research

Friends,


The National Multiple Sclerosis Society just published this great news detail on the progress made in 2010 in the field of MS research. Gilenya, Cladribine, Teriflunomide, anitoxidants, CCSVI, intestinal parasites, myelin repair, stem cell-based therapy, Ampyra, Nuedexta, depression, environmental factors, and so much more. Click here to read their recap. 


No doubt, 2010 has been an amazing year. Inspirational and hopeful.  


Best,
Christie

Panic in the MRI Tube

Clearly the worse time to discover that you have claustrophobia is during your first MRI. Yep. That’s when I found out.

At first I thought it would be a very relaxing experience. The room was quiet, it was painted a pretty light blue and there was a faux window scene painted on the ceiling. I saw clouds, flowers and green trees. I swear I heard birds twittering. I was really very relaxed. Eyes closed, I laid on the scanning bed, slid into the MRI tube and practically fell asleep. Again, I was really very relaxed. I even managed to dismiss the obnoxious MRI bangs and continued to lie still all whilst enjoying the music piping through the chamber’s speaker systems. Until. I. Opened. My. Eyes.

‘Mon Dieu this is a tight space’, I thought. The ceiling of the MRI tube practically touched my nose. Somehow, despite the obvious fact that I knew I was in a small chamber, seeing the light tan ceiling millimeters away from my face stirred a reaction. I was panicking. After a few moments, I asked myself, ‘How long have I been holding my breath’? I tried to remain calm, knowing that I needed to get through the MRI to help make a diagnosis. I tried deep yoga breaths instead.  I only made it to 4.  ‘Oh boy’, I thought, ‘I’m in trouble’. I started having visions of the ceiling closing down on my chest. Again, I tried hard to do some more yoga breaths. Still only a 4.  My breaths were so quick that I was afraid I would get kicked out of the tube for movement. Staying 100% still was mission critical. Besides there was a needle stuck in my arm for the contrast thingy. I did not want that to jiggle out. Good grief.  I was a mess. Disappointed that I couldn’t fight the anxiety, I survived with seemingly thousands of panicky short breaths until it was finally over. ‘I’m claustrophobic’ I announced to the MRI guy as I slid out of the tube. He wasn’t that interested but I was certainly worried. ‘How will I survive panic in the MRI tube next time’? I wondered.

Several months later, when my next round of scans was due, I called my neuro doc.

‘Hello Lorazepam. It’s so nice to meet you’.

I have an MRI scheduled for Monday evening and it always reminds me of this episode. Wish me luck!   

MS. Simplified.

Friends,


Trying to understand MS better? Fellow MS blogger recently posted this article:  "This is getting on my nerves" and it describes MS, simply. Thanks for posting this bunnyears!   


Best,
Christie

Coping: My MS Survival Guide

What at first I thought was denial was really more about discovering that I have terrible coping skills.  Denial is easy to identify.  It is the simple refusal to admit that something exists.  I don’t deny that I have MS, I know that I have MS.  It is irrefutable. While I’m not ‘out’ at the office, I have no problems telling the guy at the Apple store that I am living with MS!  It seems more that I cannot cope. I know in my heart it’s because I want my old body back, the one that made me feel normal.  My old body that had legs that could handle the heat of sunny California and help me walk a straight line, my old body with the left eye that saw things normally, my old body with hands that did not tingle, numb, and spark and allowed me to hold my camera without pain, my old body for which the only burn I felt was a sunburn. I always put it out to the universe:  may I please have my old body back??? The one without these pesky lesions that cause me so much grief?  Where’s my genie in a bottle?   

Unfortunately, my lack of coping skills has turned me into a crazy person, a monster of sorts.  I have developed a really bad attitude and have begun lashing out at the ones I love. This is where it must stop. That said, I have started a list of ways, a sort of survival guide to living with MS, to help tame this monster during the transition away from my old body.  As I enhance and develop my coping skills, I will add to this list. I get the sense this process is not yet over! 

My MS Survival Guide

How to Improve Coping Skills and Tame that Monster!

1. Breathe. Take deep breaths.  Seriously, every day and multiple times a day. And, take real deep breaths, using the diaphragm, the kind of breath that you feel in your back. I always forget to do this and get caught up in anxiety thus breathing much too quickly, taking in the wrong kinds of energy.  This results in me running around like a crazy person, a neurotic hyperactive who can’t calm down and begins to panic about just about everything and freaks out about the potential doom that lurks ahead. Good grief. This is why ‘Breathe’ is number one on my list.  
2. Meditate.  My good friend Mel reminded me recently to mediate in an effort to reduce the stress in my life. I am crazy busy at work so I accept this challenge. After all, meditation is free and there are no side effects.
3. Grieve. My support partners helped me realize recently that I need to grieve, to say goodbye to my former body and transition into the new one I now have.  This never occurred to me.  Grieve for myself?  Just how does that work?  It seems weird. I haven’t died. Yet, at the same time, this makes sense. I think that’s why my inner monster has revealed itself these last few weeks – I must be in the anger stage. 
4. Improvise. Living with MS does not mean giving up the things we love.  It’s a matter of figuring out different ways to enjoy things those things we love. Some examples:
1. Hiking is something I love.  Yet, as my symptoms developed, I got discouraged and stopped hiking in fear of falling down.  I hope to change that with the walking sticks I purchased from REI so I can stay steady on the hiking trails. I’ve gone out twice with no falls! Although I find it a little stressful making sure my legs don’t get tangled up in the poles…
2. Also, I love reading but have a lot of trouble holding the pages of books.  The majority of my pain is in my hands so the book always falls.  My sweetie bought me a Kindle – what a gift!  It’s a lifesaver and now I’m reading more than ever. 
5. Journal.  Buy a Moleskine journal and write everything down. Symptoms, experiences, notes from doctor’s visits, etc. I have been doing this regularly since my first symptoms appeared.  It is a great tool for me, one I use to write and draw about my MS experiences. It is a great form of expression and I hope to develop this into a stronger emotional release for me.
6. Sign up for Pilates. Balance, body awareness, stress reduction, flexibility and strength.  These are good things right? I should say so which is why I just signed up for my first Pilates class. I must admit, however, that I am a little bit nervous. I niggle about what may happen while I’m on the Reformer. Will my Lhermitte’s fire up? I am not in the mood for the spine buzz thank you very much. Will my body heat up and cause my legs to burn? Will I have enough energy? Definitely some downsides. Luckily, the upsides outweigh all this and I am looking forward to having Pilates work wonders for my stress and, in turn, work wonders for my MS. I am ready!  I’ll let you know how it goes!
   
   
   P.S. here is a great article on Pilates and MS.  Click here to read it.

So, that’s the beginning of my list. How do you cope with MS or your chronic illness?  I would love to add your tips to my guide, just shoot me an email or leave a comment here on this blog post.


Best,
Christie

MS Barometer Reveals Unequal Treatment in Europe

Hey Everyone,


I just read a brief article about the European Multiple Sclerosis Platform (EMSP) "MS Barometer" results and have to ask 'how can this be right?'  I am referring to the fact that not all EU citizens have equal access to MS treatment. I think I always knew this yet I was not aware how bad it is.  One statistic in particular really bothered me...'less than 2% of MS sufferers in Poland have access to the standard treatment.' Similar facts in Romania, Bulgaria, Slovakia and Hungary.


To read the article, click here:  Survey reveals huge disparities in MS care across Europe.


First off, I am UBER grateful for the treatment I receive for my MS and UBER grateful for the health care benefits I receive to pay for everything. I am very lucky. But, how can I help my MSers in Europe? It hurts my heart to know that there are folks out there in pain, suffering because services and care are not available. It's just not right.


Today, I am sad.