The Lessons I Have Learned from Chronic Illness

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Sorry I have really been slacking on working on my blog lately, as getting through everyday has been rather sucky, but I feel really motivated to do a post about important life lessons I have learned throughout this journey of living with chronic Lyme disease and several other tick-borne infections and fighting hard to get my life back.

My motivation stemmed from my experience from pushing myself to make a trip to the grocery store this morning. Not the little tiny grocery store about 5 minutes away, but the much larger store that is about 15-ish minutes away, which is quite a drive for me. Dave didn’t go with me on my trip, I wanted to do this by myself. For me. Lately losing more and more independence, to the point of needing Dave to babysit me while I shower, and spending most of the time on the couch, I needed a little sense of normalcy.

This morning I already wasn’t off to the greatest start, with numbness, dizziness, and my left hand has had a mind of it’s own, doing the one handed thriller dance and doing “the claw”. I didn’t have to work today, so I figured worst comes to worst, I have the rest of the day to be a couch vegetable, and I knew I could always call Dave to be rescued if need be. I wasn’t going to let that happen though. I felt the determination and drive to do this. My grocery cart was full of things that we needed, things that weren’t needed because towards the end of the trip I was just grabbing items off the shelves trying to finish and get out of there. I haven’t done a full shopping trip since September 2012. I made my way throughout the store, even though little old ladies could easily pass by me as I was struggling to get around the store.

Today it got to me, how rude people can be. I got a ton of stares, as I knew while holding onto the cart my body was rocking back and forth, and I know I was walking funny. It is hard to walk correctly when your back is in a lot of pain, you are in a complete fog, and you have little feeling in your legs and feet. My legs buckled from under me while I was waiting at the register, and the woman in front of me gave me a look of disgust and took her time, hadn’t unloaded her groceries yet even though there was no one in front of her, and was a chatty Cathy with the woman running the register about tonight’s football game, organic vegetables… etc etc.

I felt the Lyme rage in me, since she obviously saw I was having a hard time and the right thing to do would have been to let me go, as I would have done for someone else, but that is just how the cookie crumbles. Do I want extra attention? Absolutely not. I believe out of respect and kindness for others you should do the right thing, even if you might find it an inconvenience. It’s good God points when it’s your time. LOL Or Santa Claus seeing if you are being naughty or nice… either way.

Do the right thing. Sick or not, my thoughts are that people running a register, bank tellers, and more are not the people to spark up a conversation with when it is busy and there is a line. Find some friends. Use social media. I don’t know.. haha. I guess I am still a little ragey about that woman, so forgive me on that one. I am now home, and feel extremely proud of today’s accomplishment. I am wiped out but the trip was so worth it to me.

I can’t help to be a little hurt by the inconsideration of others (I will get to that later), but I am doing my best to not allow other’s to bring this down for me. I did it. That is all that matters.

Okay. Now you are all caught up on why I decided to share my experiences today, as this trip reminded me of several lessons that I have learned since I have been battling my chronic illness.

How you feel can change in an instant – I have learned my good time frames of the day. If you are going thru dealing with Lyme and coinfections, you will know exactly what I mean. I know that the best time of the day for me is between 10:00 a.m. to about 1:00 in the afternoon. This is when I seem to be able to get the most done as I still have a handful of spoons. Don’t know what I mean by having my spoons? Read an article you can find on google, called “The Spoon Theory”. It explains very well how it is a struggle to get through every single day. If I go out to dinner, or try to do things such as clean, or even just sitting on the couch, things can go from okay to very bad quickly, sometimes without rhyme or reason. It is literally hits me like a wave. Maybe a giant tsunami wave.

I have found that I have triggers that can make how I feel change very quickly, and the main ones are lights and overstimulation. I cannot handle bright lights, flashing lights, or a lot of conversation around me. I cannot handle elevators or escalators, even though sometimes there is no other option because it would be impossible for me to make it up a flight of stairs. Knowing some of these triggers at least can be helpful, so you can try to avoid them.

You will find out half the people you know are secretly doctors – This can be aggravating, but know that most people have the best intentions for you. There will aways be people that give you remedies because their uncles second cousins friend was sick, and he tried such and such and it worked, so it would definitely work for you. “Have you tried these mushrooms? They really would work!” “A little sunshine, diet and exercise!” Smile and say thank you, consider their advice if you choose, try not to diss their ideas, even if their cure involves jumping jacks and pickled eggs, and move along.

Some people will just not “get it” – As many of you know, my disease for a very long time has been nothing but invisible. If you aren’t familiar with my physical and verbal tics, check out my “About Me” link on the top of my blog page and watch my video. I had not been dealing with an invisible illness for a very long time, so people knew I was sick. At one point, I had lost so much weight that I was down to 105 pounds, with my collar and shoulder bones really stuck out, and you could see every rib of mine. I was either 50 shades of grey, or jaundiced so I had a lovely tinge of yellow. I could barely walk or needed to be pushed around in my wheelchair. There was no denying that I was very ill.

Now, my symptoms have sometimes become very invisible. At my best, I would describe myself as looking like I had a fun night out when I wake up in the morning, with raccoon eyes, but otherwise look like I am doing alright. I look “normal” to everyone who sees me. What they don’t see is the neurological battles, or the levels of pain that I may be dealing with. They do not see the extreme exhaustion. With this, everyone will assume you are fine and are officially better.

This may be hard to explain, but since I am doing better than I was at literally a near vegetative state most of the time, unaware of anything and just getting through the day even if it is curled up in a ball, things are actually more difficult for me, because now that I am no longer in that state, I can FEEL every little bit of this disease. Before I could not because I was in such a bad place.

To those of you that can feel every little bit of this disease, all the aches and pains, the neurological symptoms, whatever is going on, you are still okay. When you have no idea what is going on because you are so sick, that is when you are not okay. So don’t forget, even if everything is miserable and you feel terrible, you are still okay. It is great to no longer look like death on most days, but it can be hard on you because no one can see what is on the inside. Invisible illness can be really hard. Also know that sometimes you cannot teach someone about this illness that is not open to it.

Chronic Lyme disease is controversial and very misunderstood. You will be talking to a brick wall. It will only hurt you in the end. You will always have someone that gives the comment, “I get so tired too, it is such a dreary day!” No. That is not what we mean at all. Exhaustion is when your body doesn’t even want to move, it is a struggle to keep your eyes open, and you have not had a restorative sleep in days, weeks, or months. This is very common with those with chronic illness.

Exhaustion is waking up after 12 hours of sleep feeling like you haven’t even gone to bed yet. People will make assumptions, judge you, be rude, stare… it is best to let these things go. It stings, sometimes a lot, but as Taylor Swift says, “shake it off”. 🙂

As much as you would like, you cannot change people, and shaking it off and letting things go will make you much happier, and less stressed. 🙂 🙂 Stress = worsening of symptoms. Who wants that?!

There still are some really great people out there – Once everything changes and you begin to get really sick, you cannot no longer go out or do the things you use to, you will find who will be there, and who isn’t. Those people you may have thought were your friends quickly turn into acquaintances, and people who you thought would stick by your side literally vanish. Some people you believe that are great friends will listen to you and sit with you, but you find that they are talking behind your back calling you lazy. I had a “friend” tell everyone that I was just being lazy and I pick and choose what I do. He even went to the extent saying I bring things on to myself like having seizures. I don’t know how that is possible, but that was what had been told about me. Another friend who I thought would be there completely disappeared, and only showed up to my house nearly a year later, and asked me for money. Wha wha what?

Do yourself a favor, snip the fat.

When there is negativity and stress in your life, it prevents you from healing. I have found many people come out of the woodwork and truly care about how I am doing. They genuinely want to help. Several people in my town came together and held a benefit for me when I first began to go to DC every month. I was amazed, I felt blessed. I have a friend who would wash my hair while I had my line in twice a week, and has even snuck to my house when I wasn’t home and cleaned it from top to bottom. It made my day… okay my entire week.

Another girlfriend comes over and knows I can’t do a whole lot, but chats with me and we sit and watch movies. For all those bad people in your life, don’t forget that there are always people in your life that really do care. You are never really alone, even if you may feel like it. If you just want someone to talk to or offer support on some days, utilize social media!

There are tons of great people out there that although we all have our different stories, they know and understand what you are going through. It is great to get advice and share things, as sometimes your loved ones cannot relate to this all.

Don’t always make everything about you – I know this one can be tricky. This disease has taken over your life. Every single day you live it, breathe it. It sucks. We know. Those that are close to you and have stuck by your side are wonderful, and others that take an interest in how you are doing, but they do not want to hear the negativity all the time.

Yes, it is okay to share, give updates, and vent once in awhile, but don’t forget to ask how THEY are doing, what is going on in their lives, and listen to what they have to say. These people have lives too, and struggles of their own that we often forget because of what we are going through. Support them equally in any way that you can and be their friend too.

Never forget others are going try this journey with you – Although it is hard to see the big picture, I always remember that Dave is living with this disease too. Life hasn’t just changed for me, it has changed for him. He went from my spouse to my caregiver. He has made tremendous sacrifices but has stood by my side every step of the way. You are not the only one fighting this battle. Appreciate these great people in your life.

Be grateful – As I wrote above, be grateful for those amazing people in your life. Be grateful for the things that you CAN do, and try not to dwell on what you cannot do at the moment, and remember that things will get better in time. Always find the silver linings. There are ALWAYS silver linings, even if you feel that you are rock bottom. Hold onto these things, as they will help you during the darkest times.

I never forget that I do have a few amazing friends, a husband, my family, a home to call my own, several of my symptoms that have improved, even when I feel like the world has turned upside down. These are all my silver linings that make life so much better for me.

I have written past articles and have mentioned even if it sounds silly, things that you are thankful for. Maybe the things you are grateful for are things you are able to do. You will come up with more things than you would have thought!

Be proud of your accomplishments, big or small – If you do something that you haven’t been able to do in a long time, even if it is something like being able to sweep and vacuum, be happy. It might be a very big deal for you. Share it with your friends, your family. Be proud. You deserve it.

Your doctors are only human-  I love my team of doctors and I have faith they will one day get me well, but they are human. They make mistakes, they do not know everything in the world. They are also not mind readers. Do not underplay how things really are. He or she doesn’t know how you are feeling or experiencing unless you tell them. Let them know everything even if you think it is not a big deal. Sometimes they have to connect the dots. Bring notes with you to your appointments, keep a notepad handy for information you may want. I know I forget everything very quickly, so this is a great tool. A life lesson with Lyme brain: Sticky notes are a life saver!

Know your body – If you know you cannot do something, then don’t do it. It is okay, we have limitations. Sometimes you have to cancel plans, sometimes you may not be able to switch that laundry over (that is me this afternoon haha), sometimes you just have to say when.

If you know that something is wrong or missing (this goes along with my next topic), then try to fight for it. I have been trying to get several gynecological issues that aren’t being addressed that I know something is very wrong, and have been seeing doctor after doctor to try to get an answer. I have been in a rut for treatment, and I know something is missing. Something is not right. I am fighting for it. Now my doctors are working together to try to figure out what is going on and what is not working.

Do your research/be an advocate – This is so so important! I cannot believe the amount of people that do not do any research on their disease! Google is your friend! Books are your friend! Learn everything you can about your illness. If you are being sent to get blood work done or any test, find out WHY.

Get your results in your hands, and see what it may mean. You may find some things along the way that you have not been tested for, or something that you think is missing from your treatment. Bring it up!

Don’t have full trust going into this, and don’t have 100% trust in your doctor. Doing research might even make you realize your doctor is not right for you. I will never tell anyone what is the proper way to treat this disease, as there is no one size fits all, but so many people are being under treated, aren’t looking at several abnormalities common with this disease (Lyme can effect every single part of your body) , and aren’t looking at every single aspect that might be holding you back from getting well (Detox, deficiencies, toxicities and more). Fight for yourself. Be an advocate for yourself. Knowledge is power.

Pushing yourself can be entirely worth it – There are some days that I want to do nothing but lay on the couch or stay in bed. Something as simple as dinner or a movie seems like an impossible feat, but I push through it and it feels great to be able to get out there. I know that there are consequences, sometimes lasting for days. A higher level of symptoms, pure exhaustion. That night going to dinner with friends, laughing and being social is worth it, I promise you.

Mind- over- matter can get you to do some great things. I didn’t feel good today, but I pulled myself together the best I could and said to myself, “YES I CAN” and accomplished something great. This concept has kept me working, kept me wanting to keep going and fight. I never give in or give up. This concept has probably kept my sanity through all of this.

Have hope and be strong – Things will get better. You just have to believe it. This is by far the longest journey that I have been though, and I am sad that I have given up a big chunk of my twenties, but I know that in time I will get more and more back to “me”.

Positivity is an amazing medicine and if you keep your head held high and think of the good, you will be so much stronger beating this. Check out my blog post on positivity, https://kimmiecakeskickslyme.wordpress.com/2014/02/04/staying-positive/  , you will find it is even scientifically proven that keeping the faith really is an amazing medicine.

I could go on and on about lessons that I have learned, but I suppose that is it for the day. You don’t want to hear any more of my ramblings. 🙂 I hope my story uplifted you a little bit, making a big accomplishment. You will make them too, just give it time, keep the faith, and continue to fight. Love you all!

12 thoughts on “The Lessons I Have Learned from Chronic Illness

  1. Thank you so much for this letter. My daughter has been dealing with lyme for over 17 years. She is still working and raising a teen daughter by herself. As a mother you are helping me understand some of what she is dealing with. God Bless you and will be praying for you also.

  2. i get it girlie – great read – one i am going to reblog 🙂 I am actually going to try to start doing some writing too….and will be back on FB once i hear back on SSD. YOU hang in there.

  3. Pingback: From a Fellow Lymie – The Lessons I Have Learned from Chronic Illness | Slices Of Lyme Pie

  4. I found your blog tonight doing a google search for the motherfucker gene, which my Lyme doc tested me for and I have. Yippie! Great blog page on the gene and all things surrounding it.
    Reading through your blog pages and now this one, I feel as if someone has crept into my brain, stollen some of my Lyme experiences and is sharing them here.
    You write expressively, honestly and intelligently. I’m certain you are helping so many people who feel isolated and abandoned with this terrible disease.

    Sometimes I still pretend the sudden odd sensations (dizzy, heat sweats in the grocery line) and the exhaustion, and the sadness are just me being lazy and feeling sorry for myself. Then I remind myself that I have Lyme, and now an additional contributing factor, the Motherfucker gene, and I forgive myself.

    Like you I was once an amazon, blazing an athletic trail, traveling, working and going to school, raising three kids, etc. Now I’m lucky to make it to 1pm without crashing. I do pride myself in still having strength enough to shovel the snow off my driveway. But I credit the Wovel with most of the heavy lifting work.

    Thank you for sharing your struggle. You cannot know how much it means to us fellow Lymies to hear your heartfelt honesty. Keep up the fight, sister.

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