As part of my Disability Claim with my works long term disability carrier, I must get various forms filled out, usually by my doctor but this time I was given a form to fill out myself. A lot of it is basic, but there was one question that asked me to describe my typical day. I found myself really stumped and kind of annoyed with the whole process. I like to consider myself an optimistic person, but this was a tough one for me and I really had to dig right down to try to put a typical day into perspective for myself and I just wanted to finish the form quickly and be done with it. It was hard for me because sometimes I still try to fool myself that I am great, but when I was really forced to analyze this, it is apparent that I am not great, I still have MS. On the other hand, I am great, just not necessarily physically great. I have a home to live in, I have the love of my life walking this path with me, I have 6 beautiful grandchildren that I can see any time, I have 3 wonderful children and I am surrounded by family and friends that love me and lift me up. But my attitude hasn’t always been like this, especially when I was struggling the last few years of working before going off on disability.
Hearing my Neurologist and family doctor label me as “disabled” hit me like a ton of bricks, and the gravity of my Multiple Sclerosis both overwhelmed and scared me. At that moment, I felt like a failure—incapable of helping myself or of being a contributor to my own household and life. The idea of being disabled was embarrassing to me. I worried what people would think. I was worried they would think I was lazy, faking my illness, or they would think that I was undeserving of a disability status, so I kept how horrible I was feeling a secret from nearly everyone, at work and including my own family, the ones that love me the most. But what I know now is that they knew all along. I guess I’m not as sneaky as I thought I was.
Back to the form – some of the questions were easy. But if you have MS or any other chronic illness you know that our days aren’t typical, are they? Here was my reply:
Has your medical condition changed in the last year? If so, how? Yes – a steady worsening of multiple sclerosis symptoms.
How often do you see your doctors? Neurologist, every 6 months unless otherwise necessary. Family doctor – monthly.
Do you anticipate working in the next 6 – 12 months? No
And then, the big question……..
Describe your daily routine or how you spend your time at present – After waking up, I assess how my body feels and do what I am able to. Sometimes I can shower but if my balance is really off, that waits for another time or maybe even another day. I attempt making breakfast. I stretch and try to move depending on my level of stiffness and vertigo. My day is totally dependent on how I feel on an hour to hour basis. There are odd days I can take a walk but that zaps my energy and is not a possibility in inclement weather, especially cold and ice as I have reduced feeling in my feet. My arms and legs have altered sensations, pain and weakness. It is very difficult to say what an average day looks like except to say that I get out of bed and go to bed. I have brain fog and difficulty multi-tasking. I currently have a housekeeper and someone who looks after yard work. We have done renovations in our home to accommodate for my disability both currently and future possibilities.
I couldn’t get the form sent off fast enough so I didn’t have to think about it anymore. Now that I have had some time to think about it though, what I should have said is something along these lines:
I do not have “typical days” anymore. I have low, medium, or high pain days or spasticity days. I have functioning, semi-functioning or debilitating days. With Multiple Sclerosis, I am never able to fully escape the disease as its symptoms are an everyday occurrence. My day depends on how intense the pain, weakness, brain fog, fatigue, itchiness, balance issues, vertigo, heavy limbs, spasticity, pins and needles are and for how long. I adjust my schedule throughout the day depending on the intensity of these symptoms which I experience daily on varying levels. One day I am fully capable of a task while the next day I struggle with generally simple things like brushing my teeth, getting dressed or making dinner.
There are days I wake up, (usually early as sleep is continually disrupted due to pain and or muscle cramps and spasticity), with a deficit of energy because I used up too much the previous day and I know that this is the best I am going to feel all day. I usually need to sit for a while once I get up to gage how the pain, muscle spasticity and vertigo is, then I try to make myself some breakfast. My first alarm goes off about an hour after I wake up reminding me to take my first handful of medication, both prescribed and vitamins / supplements, just so I can maintain a manageable level of neuropathic pain and muscle tightness. I generally use this time in the morning to read some of the blogs I follow and check the daily news while gorging on Food Network or the Cooking Channel. I may take some time to journal or work on my blog (10 -20 minutes at a time are about all I can handle as my vision gets blurry and pain and discomfort makes any more than that unrealistic), but I try to do a little as writing has become something that is helpful to me in dealing with my illness.
On a good day, I am able to run some errands, which I usually break up throughout the week in order to not increase my symptoms or use up too much energy in one day. The grocery store and laundry are two tasks that generally wear me down. My next alarm goes off at lunchtime for more medications.
While eating healthy is part of my life now and I love to cook, making dinner can still be challenging some days. I tend to do meal prep earlier in the day because by the time 2:00 comes around, I am running on very little energy so pre-planning is a must if I am going to continue to eat healthy. I usually spend the evening watching TV, however, my pain and muscle tightness increases, and I become fidgety. At 7:30 pm, I take another handful of medication to prevent worsening neuropathic pain, overactive bladder and increasing muscle tightness throughout the night.
Some of the medications I take cause a wide range of side effects that I try to manage as well, including making me sleepy. So, naps and restful times are a must.
While I try to get out, I spend a good portion of my time at my house. When I do go out, I have to plan it out. Will there be a lot of loud noise, too many people, extreme heat or other triggers that will make my MS symptoms worse? I find that I have lost some of my confidence when it comes to being alone. I can get turned around easily and then panic sets in. For example, my husband and I went to a cute little town in Arizona (with his sister and her husband) but we each went into different shops and when I came out of the shop, I was confused about which way the car was. Just to put it into perspective, there is only 1 road in this town, yet I couldn’t remember if I needed to go left or right. I started to feel myself panic and the tears were coming. I tried calling my husband and he didn’t hear the phone so I just stood there waiting and hoping to see a glimpse of one of them (there was a lot of people roaming around), which of course I eventually did, but the panic was already there. I felt stupid and ridiculous both at being confused but more so about the fact that I was panicking and that is someone that I have never been, it’s extremely frustrating and embarrassing. So, whatever my errand is, I know I need to build in extra time because any task now can take me twice as long to complete. When my abilities change so dramatically from one day to the next, I have ended up questioning myself. I know none of this is my fault, but deep down I can’t help but wonder if maybe somehow it is.
So, while I continue to try to keep my health manageable, I have days that are really hard. I have moments where I wish I would just wake up feeling refreshed. That I had less symptoms so I can do the things I want to do, the things I used to be able to do. There are many times that I fake it until I make it. Even on the good days I have to be careful I don’t overdo it because it can send me into a relapse or flare up and that’s scary. I’m tired of saying tomorrow I will tackle this task and then when tomorrow rolls around, I again don’t feel up to it. So usually, I just push through and do it anyway.
Bottom line is that having Multiple Sclerosis sucks. It sucked when I was first diagnosed 15 years ago and it sucks today as a 55-year-old woman. That’s the brutal truth. It can suck the life out of you every single day IF YOU LET IT, WHICH I AM NOT. But it is here to stay so I do my best to embrace it and meet it head on.
That is what I wish I had written on my form.
I’m not writing this because I am having a pity party. I am writing it in hopes that it may help someone else who may be struggling with their own identity while facing a chronic illness. I am so happy with my life,
even with Multiple Sclerosis. especially with my Multiple Sclerosis, because I have found silver linings in my disease that would never have happened if I wasn’t presented with the opportunity to slow it down and take a good long look at my myself and my priorities. I can’t even say it isn’t what I expected my life to be because I am married to the man I always dreamed of marrying and I have the family that I always dreamed I would have. I will continue to work hard on having a positive outlook. One thing I didn’t expect when I was diagnosed with MS 15 years ago, is that I would become empowered and for that, I am forever grateful. Living with my limitations has taught me to judge others less and to have more compassion for people. There are people who don’t look sick or who have serious family problems, have had traumatic experiences in their lives, there are those with other problems or who have issues that they hold close to their chests and don’t tell anyone about. Don’t you think this world can stand to have a few more people with empathy out there?
How about we all be the change we want to see in this world?
On another note, if you know me, you know that I had my first garden this year! Yay me! But I have had more zucchini than any 1 person can eat. I also have an overabundance of cucumber and tomatoes, so I have been canning, yet another thing that is new to me! So, I want to share with you this yummy recipe for dill pickles – next up for the blog will be my canned pasta sauce and my Garlic Dill Zucchini Relish! I sure hope my mom is watching me in the kitchen – she would be amazed how far I have come. From the girl who slapped Velveeta on a tortilla and called it a quesadilla to growing my own veggies and canning the excess! That’s how far I have come~
Garlicky Dill Pickles
A great way to enjoy those cucumbers all winter long
Pickling cucumbers / gherkins
1 Tbsp Dill leaves per quart
1-2 whole Dill flower heads per quart
1/2 tsp Peppercorns per quart
2 cloves of Garlic per quart
Sea salt or Kosher salt
Preserving jars & lids
- Sterilize your preserving jars with either boiling water or by placing them in an oven at 130°C/265°F for thirty minutes. Whatever your method of sterilization, allow the jars to cool before packing them with your ingredients. While they’re cooling, take your jar’s lids and place them in bowl of boiling hot water. Leave them there until you need to fit them onto the jars.
2. Wash your cucumbers and start packing them into your jars. If they’re small, pop them in whole but if medium to large cut them into slices. This helps to get more into the jar and also for easier serving once the jar is opened. For each quart of pickles, you’ll add half a teaspoon of black peppercorns, two whole garlic cloves and plenty of dill. Or alternately, you can use a pre-mixed pickling spice.
3. Make the brine: for approximately every four quarts of tightly packed cucumbers you’ll need to bring two quarts of water and one quart of white vinegar to a boil. Add 1/2 cup of salt and stir until dissolved. Let this cool until just warm and then pour it into each of the jars, filling to a centimeter (just less than 1/2″) below the top of the jar’s brim.
4. Clean the tops of the jars then fit on your preserving lids and screw the rings on.
5. Place a metal preserving rack or towel at the bottom of a deep preserving pan and then place the jars inside. The jars should be at least an inch apart and the pan needs to be deep enough to have the jars inside with over an inch of water comfortably covering the tops.
6. Cover the jars with warm/hot water from the tap then bring the pan to a boil. Boil the jars for fifteen minutes then lift them out of the water. If you’re using a towel at the bottom of the pan then you’ll need a ‘jar lifter’ tool available at many kitchen shops. Set the jars on the counter and allow to cool. You’ll know that the jars are properly sealed when you hear the lids popping.
7. Allow the pickles to infuse with the brine for at least two weeks before eating them. Stored in jars in a cool pantry your pickles will last up to a year, though I doubt you’ll be able to let them sit there that long.
Until Next Time!