Things I Wish People Would Realize About Living With a Chronic Pain and Ilnesses

 

   

   I had to cancel out on plans again recently to go and see some friends that were in from out of town and were playing at a music festival.  I really wanted to go and had planned to.  Up until the hour before we had to leave to get there, I was praying and that I would feel better and be up to it...sadly, I wasn't. 😔  This is the second time I have not been able to go and see them due to my health.  It was a scorching hot day and my body does not react well to heat at all.  I was nauseous and in pain...not a good combination.

   We attended a graduation party in May and it took everything I had to go to it.  I again was in pain and had to shuffle my way across the floor just to go and see our dear friend who the party was for.  After that I sat down and stayed in that chair for the rest of the time.  I got strange looks when my hubby made up a plate of food for me and I snapped at another friend when he started poking my side to get my attention.  It hurt!  I explained to him why I snapped and why I was hurting and then apologized again a few days later.  I felt awful for snapping at him because he is a really sweet person and was just trying to be funny.

   I've had to cancel out on work numerous times.  This is one of the reasons that I can no longer substitute teach.  Between the stress of dealing with some very rude and unruly students (most of the kids are great, but there are those that are not and make teaching very difficult) and CFS and Fibro flares and crashes, I just could no longer do it.  Even with my working with the MOPS program now, I have had to cancel out a few times and am very blessed that they do understand my health issues.

   There have been family members and now former friends who have called me a liar and said I was making this up to get attention or said that I am lazy and taking advantage of my husband.  I went through years of doctor's appointments with no real answers as to what was going on with me and was told there was nothing they could do to help me.  I kept getting sicker and sicker and had all those other illnesses that I and my doctors did not realize were all part of Chronic Fatigue Syndrome and Fibromyalgia.  I finally got the CFS diagnosis and later the Fibromyalgia diagnosis.  Even with the diagnosis, there are still people who think I am faking it or at the very least, don't realize how bad things really are and don't understand why I can't hold a regular job and have to cancel plans.

   Here are a few things I wish they would realize about people like me who live with various debilitating and life altering illnesses.

~I really wish I was healthy!  It is frustrating to go from doctor to doctor, have multiple tests run and be told they can't figure out what is wrong for years and years.  There are many other illnesses that come under the "umbrella" of the diseases that I have too.  I never know when my stomach is going to rebel because I have eaten something that causes me distress and I have severe stomach cramps and have to be near a bathroom for hours on end. I get dizzy easily.  I have brain fog that is so frustrating that I cry because I cannot find the words that I want to say.  
~I hurt every single day!  There is not a moment I am pain free, even when taking strong pain meds after surgery.  The pain is always there.  Some days it is less intense and I am able to get things done and other days, getting out of bed and even shuffling down the hall is a major accomplishment.  It feels like the worst flu ever and there is no escape from it.
~Having to tell my grandkids that Grammie is hurting and that I can't even share big bear hugs with them some days kills me inside.  I never want them to think they have hurt me or be afraid to hug me, but that is my reality and unfortunately their's also.  I also want to be able to have the little boys spend the night here more often, but I just don't have the energy to keep up with them and that breaks my heart.  Just the slightest touch can hurt.  Go ahead and touch your arm, even lightly...does that hurt you or do you just feel a little pressure?  For me, that light touch it can feel like I have been punched hard.  Today is one of those days.
~I want to work!  Having to give up teaching was one of the hardest things I have ever had to do.  I love teaching and it is what God designed me to do.  I miss it and the kids so much.  Making that decision to quit due to my health was one of the hardest things I have ever done.  It was not fair to the students though to have a teacher that could not think clearly, had constant headaches, and had very little energy.  They deserve better. 
~I do feel like a burden to my husband at times.  Between me not being able to work much, the costs of my supplements that I have to take just to function, and me not being able to do as much around here anymore and him having to pick up the slack and him having to shoulder the total financial obligations, it is a lot of pressure on him. He also comes with me to almost all my doctor's appointments because I can't remember what supplements or the dosages I am on and he will fill in the blanks when I can't get the words out that I need to say.  He is an amazing man and keeps telling me I am not a burden and that he took our vows of "in sickness and in health" seriously.  He keeps saying that it is his job as my husband to take care of me and that is just what is will continue to do.  I have to say that I am one very blessed woman to have this man as my husband and best friend.  I would be lost without him.
~I have to rely on others to help me more than I would like to.  When we have a big family event, it's all hands on deck.  My kids, hubby, grandkids, cousin, extended family, friends and even my mother, who is in her 70's, pitches in.  My mother is amazing and will cook up a storm and bake tons of cookies for baby showers, weddings, and will come over and help take care of me after surgery.  She also provides a safe and calm place for me to retreat to at her home when my husband and I need a break from the world and a place to heal.  Our Rachel also came and stayed with me after my hysterectomy and we shared so much and learned a lot about each other.  I am forever grateful for that time and for her.  Family gatherings are potluck style which makes life so much easier for all of us.  Big holiday gatherings are shared with Heather's and Rachel's family also and they all understand that I have my limits.  Some of them have seen me during my flares and know that just getting there took everything I had in me.
~There are times when my emotions are all over the place.  I can cry at the drop of a pin for no reason at all.  I get hyper sensitive emotionally at times.  When you have been in pain physically and are emotionally spent too, it is hard to keep it together sometimes.  I have anxiety and panic attacks and am prone to depression.  This comes along with these illnesses too.
~My neck and shoulders feel like the muscles are on fire if I sit at the computer for over 15 minutes or more.  The same thing happens when I am cutting up food, cooking, folding laundry etc..  Bending over to garden causes the muscles in my back to seize up.  My legs will cramp up and I have difficulty walking, I have restless leg syndrome and my legs cramp up almost every night despite the supplements that I take daily (which do help).
~The cartilage between my ribs hurts.  Again, touch your rib cage gently...does that hurt you?  No...well count yourself blessed because it does me.
~I look healthy on the outside so people can't seem to understand and stare at me when I have to use the shopping cart to hold me up and help me walk in the store some days.  I'm sure it is confusing to people who see me often because some days I am fine and can walk around with no problems and other days I look like an old lady who needs her walker and shuffles slowly.  To the people who are stuck behind me in a line, I am sorry that I am not moving fast enough for you...there is no need to huff and puff and roll your eyes at me.  I pray you never have to go through this!  My husband has had to cut my meat for me in a restaurant and put the leftovers in a to go box for me because I don't have the strength in my hands or arms to even do that some days.  You should see the looks I get when that happens.
~Some days I feel like I literally have lead weights hanging all over my body.  Everything feels heavy and it hurts.  Moving hurts, sitting hurts, holding my head up hurts, even laying down hurts.
~Yes, I have gained weight, a lot of weight and  yes, it makes me feel awful about myself.  I most likely eat less than most people and yet I still gain.  The reasons are two fold.  I can't get out and exercise like I used to because it feels like my muscles are tearing when I do (which is exactly what they are doing with Fibromyalgia) and if I overdo it, I pay for it for days on end.  The second reason is that my body is always in "stress mode" so my body holds onto the fat as a way to protect itself.  That is how our bodies were designed, to hold onto fat to protect the organs from harm when under stress.  Now imagine that your body is always in stress mode 24/7.  It wears you out big time and your body refuses to let go of fat and tries to keep adding more to protect you.
~Please don't tell me to get more sleep.  Don't you think I want to and am trying?  CFS and Fibromyalgia both make it very difficult to sleep and yet that is exactly what I need to help heal me. If I have to go and lay down for awhile during the day, please don't think I am being lazy, it's just that my body can't deal with anything else and is crashing.
~I am always looking for things that will help me heal from or at least cope better with these illnesses.  I appreciate when people share things because I feel like we can all learn from each other.  However, please don't get all judgemental and tell me that if I only went on a special diet I would be all better.  I have had people actually tell me that it is my own fault that I am sick because I am not on some special diet. I have tried them and no, they did not work for me.  Everyone's body chemistry is different and what works for one person may not work for the rest.  I'm happy to hear about what has worked for you though because even if it did not work for me, it might work for someone else who reads my blog or someone that I talk to that also has one of more of these illnesses.   Just please don't be all judgemental and try to "blame me" for my illness like it is somehow my fault or that I want to have this in my life.  I don't!
~These illnesses are ones that I have to live with for the rest of my life.  There are no cures and you just have to learn to manage them the best you can.  I don't do the medications because the side effects can be horrible and even deadly.  My body chemistry is such that most of these medications don't help anyway.  Being that it is a lifelong illness, sometimes people forget that I am going to need help at times and that it would be much appreciated.  When someone breaks their leg, has surgery, or has cancer, people are quick to run in with offers of help because they realize that that person and their family really do need and appreciate the help.  That is how we should be.  I so am thankful for the help we got when my husband broke his leg and when I had surgery.  Most of these people heal and go on with their normal and healthy lives and I am so thankful that they do! They deserve our help and prayers for healing in their times of need and I will always try to help in any way that I can also.  People like me don't. We will never be healed  in our lifetime(unless God decides to heal us) and have our healthy lives back.  This is a lifelong "sentence" for us. Some of our friends and even family may not understand this and they may not be able to cope with the changes in our lives and how it affects them either directly or indirectly.  The invitations to events, the wanting to get together for coffee, the calls just to see how we are doing or if we might need them to pick something up for us stop.  I understand that it might be frustrating for them when we can't make something, but we still want to know that we are valued and that you want to include us.  There are times when we can make it, and other times when we can't.  I am thankful for my friends and family who have stuck by me and do try to include me and check on me and offer help.  It means more to me than you or they will ever know.  
~I only have so much energy and have to pick and choose carefully what I can and cannot do not only on a daily basis, but on a weekly basis too.  I can only handle 2 big events per week at this point.  For me that means if I work for a few hours at my MOPS job then I can only do one more big thing that week.  That could be watching my baby grandson Steven while his mommy works, having my older grandboys over or going somewhere with them, spending the morning processing produce from the garden, doing a big shopping and stock up trip or even going to a party of some sort.  I also cannot do these things back to back.  I need to rest a day in between.  I do still need to try and keep up on my regular housework and there are days when I can't even do that because I am on the couch with no energy and in lots of pain from pushing myself too much.  I have to take breaks during the day between tasks too.  If I am doing the laundry, I get the load started and maybe hang out another load of the line, then I need to rest for a bit.  I can then vacuum and maybe do one more thing, and then I have to rest again.  This is my life now and I am learning to pace myself.  There are days when I cannot even do this and as frustrating as that is, I am trying to learn to give myself grace and not beat myself up over it.  There will be those rare days when I can get a lot done, but like I said, they are rare.
~I try to have a positive attitude and be thankful for all that I am blessed with.  If I did not, then I would be a wreck and in a puddle on the floor and go into deep depression.  If I am having a bad day and have a bad attitude, please bare with me and realize that I have reached the limit of my pain threshold  and emotional breaking point at that moment.  People with these kinds of illnesses can all only deal with so much before we break.  Please just listen to me and realize that this too shall pass.  I just need to know that someone cares because that helps me through.
~I have to make running list of what I may need at the grocery store, list of what needs to be done around the house and even what I have gotten done.  I have trouble with my memory at times and I can't rely on myself to remember things from moment to moment.  I can even forget if I have done the watering of the garden so I keep a running list of things and cross off but not erase it on my white board.  This way I can get tasks done and actually see that I did them.  My mother says that is also a part of getting older, and I would have to agree with her there, but it is just exacerbated by my CFS and Fibro Fog.
~It takes me longer to get things done than it used to when I was healthy.  A great example of this is that is has taken me a full 3 hours to do this post.  In the past, I would have been able to get this all typed out much faster.  Of course then my brain worked a lot better and I was not in pain when I typed.   

   On that note, I am going to end this post.  I know there are other things that I would have liked to include but I forgot to write them down so they have escaped this sieve of my mind. 😉 My neck and upper back also feel like they are on fire and I need to go and lay down now for a bit.  Such is my life but again, I am so thankful for the wonderful people in it who are there for me and I could not do it without them.