Skip to content

Living with Chronic Pain/Illness

I’ve been wanting to make a post like this for awhile but every time I start one I end up deleting it. Sometimes I’m afraid people will think I’m looking for attention in posting these kind of stories of my life and I get self conscious because I know there are lots of people who don’t want to hear it. However, I need to stop thinking that way. There are many other people suffering like me and I have learned, after following more people with Chronic Pain issues and Fibromyalgia on instagram, that I don’t need to hide it or feel like it is just a minor part of my life.

Because, that is just it. It is not a minor role in my life. 

It is my life and I have learned to deal with it as best as I can. 

I understand that people who don’t get sick like this will never truly understand. I don’t fault them for saying things that are actually hurtful and I know some of them mean well. Friends, Family, Co-workers and the like.

During a work evaluation my bosses said something that made me really think. They mentioned that I seemed to have been a lot healthier in the last year. Honestly, it surprised me that they said this. Mostly because they actually noticed the change in me, though it was not quite right.

I’m not healthier or better, I have just gotten a lot better at managing and hiding my issues. They don’t get to see the other side of me when I get home. The days when I can’t eat much, or when I have to spend hours in the bathroom with cold sweats and pain.

Or the moments when I’m laying on the sofa in agony because my legs and/or arms feel like lead or like they have been pelted with rocks. 

Or when I’m trying to eat and my hands have such a tremor that it is hard to keep my food on the utensil.

That is okay though. I don’t need them to know this or to understand. It is my business and as long as I can make it to work and get the job done it shouldn’t matter to them.

I’m lucky to have very supporting family members. Those who know how I suffer and don’t try to say I’m just being lazy or faking it. I understand that is very rare when I read stories of other people fighting their close family members, treating them like they are lazy or attention seeking. It is amazing that even family members will do this. 

That also brings me to something that I noticed about my chronic issues. A lot of people talk about saying goodbye to their old self. Almost like a funeral service for their past life when they were healthier and happier. To try and move on and cope with their new life and situations. I didn’t really have that though.

I have been sick since I could remember. As a young child I have constant problems with my stomach hurting. It has only moved on to other things as I got older. I could say goodbye to my old self once I was diagnosed with Fibromyalgia but my old self was not much different then my new self. 

However, I have come to terms with my new way of life. I have learned to love myself and put myself first to keep myself from hurting more or making things worse for myself. Sometimes friends and family get disappointed but the ones that matter always understand in the long run. One day I might be good enough to join my mother for a nice walk around the neighborhood, but another day I can barely hold my cellphone to text her.

When my sister comes to visit, we like to go looking around at stores, which I’m happy to do but I get worn out super fast and sometimes we have to plan to do short trips through out the day rather than just spend hours at the mall all at once. 

Awhile ago I had to leave while watching a movie with my friends at their house. I was really into the movie and in the past I probably would have tried to push myself to finish it and be in really bad pain but I didn’t. I told myself, this movie will be available to finish another time, why should I suffer through it? It won’t make me enjoy it more that way. So I went home and took care of myself first. I know this kind of made my friends sad but they did understand.

So I surround myself with people who will understand this. I think that is why I choose not to date. It would be nearly impossible for me unless that person also suffers with chronic problems and can understand me. That is rare though.

I’m not trying to be a downer with this post. In fact I’m trying to be positive. I may not have the life that most people have and some might even call it terrible but I’m happy to be alive and I love my friends and family who understand and try to help me. While I’m cursed with this weak body I have many other positives in my life for which I’m grateful for.

I’m also lucky to have found some doctors who do not write me off and actually do their best to try and help me. I know how hard it is to find doctors like that with chronic problems. 

I will not hide it anymore though. I will not lie to people about feeling better and I will not push myself to do something to try and make others like me or happy just to end up feeling like death myself. I will also not feel ashamed of my issues, if someone wants to say things like –

“You’re too young to have all these issues!”
“Stop complaining about being tired all the time. We all get tired!”
“You don’t look sick.”
“It could be worse.”

I will just walk right off. No need to get into fights that are meaningless to people who will never understand anyway. I will not stop talking about it because it is my life now and I refuse to be told to shut up about it because they can’t understand.

I’m proud of myself. Still working a full time job, still learning and studying new things, still trying to do my hobbies even if it isn’t as much as I use too. I’m still finding ways to smile and enjoy my life. I fight one day at a time and each day I make it through I consider a big victory, wither it be a bad flare day or not. Even if things change in the future, that is alright because I know nothing stays the same and I’m prepared. 

Anyway, most people know this if they have been following my blog but if you are new I will just mention the conditions I have.

  1. Irritable Bowel Syndrome (IBS) – Diagnosed sometimes when I was very young, maybe around 13-14. Still not too sure this is exactly what I have but it does help the doctors to get medications approved for me to take. The reason I’m not completely sold on this diagnosis is because of my partial obstruction. IBS doesn’t cause damage to your colon but mine seems to have done that anyway.
  2. Fibromyalgia – When I heard this word I was so upset, I think I was around 27-28. They first mentioned it a few years before I was officially diagnosed but they had to run a series of tests on me to rule out other things that can seem like Fibromyalgia. I even had a MS scare when they found inflammation in my brain. Luckily the spinal tap showed nothing. This one was a hard pill to swallow because, like IBS, there is no known cause for it and no perfect way to treat it. I was also very tired because it was annoying enough to deal with IBS and stomach pain. Now I had to deal with wide spread pain in the muscles, skin, and joints.
  3. Asthma – Had no idea I even had this. Mine is not very severe though, so I count my blessings. I was just going to an allergist to test me for allergens but when they heard me coughing a lot in the waiting room they were like, girl you have asthma. They were right! Once they treated me my cough stopped.
  4. Gastroesophageal Reflux Disease (GERD) – I think I got diagnosed with this after an EGD was done (around the same time they gave me the IBS diagnosis) and they saw inflammation through out my esophagus, stomach and the beginning of my small intestines. This one sucks… even with the PPI medications they put me on I suffer a lot because mine is more likely due to bile and not acid.
  5. Interstitial Cystitis (IC) – Uh, not really sure if I was actually diagnosed with this or the doctor who decided to say I have it was full of shit. Haha, I honestly think my bladder problem is just tied in with my fibromyalgia and ibs. Still, I was feeling like I had bladder infections a lot and going to the bathroom too many times. They finally referred me to a urologist and he diagnosed me with this but didn’t really do any tests on me soooo… yeah I just didn’t go back. I was happy enough know I did not have a bladder infection all the time. Shrugs.

If you made it down this far thank you very much for reading through my long rant. It means a lot to me. ♥ I know it got kind of long. I just feel the need to start posting some better blog entries these days. Ones that are more real. Thanks for reading. 🙂

Published inFamilyFibromyalgiaHealthOpinionsOtherSickStoriesWork

19 Comments

  1. This really resonates with me. I have been living my life for the last 20 years with chronic pain and fibromyalgia as well. I pretty open about it on my blog and have never really cared much what other people think as far as me posting about it. And I’ve always looked at it as my story and talking about it in posts might someday benefit someone who stumbles upon it and if not then at least it might let someone know they are not alone if they were suffering in silence.

    It’s so true about hiding it. I think because we look so “normal” from the outside that people either forget or don’t pay attention or even don’t believe so then we ourselves start hiding it because we feel like complainers or like people think we are faking and we become very good at making everything look all right to the outside world when inside we are breaking down and barely coping.

    If there is anything I could say to you it would be don’t be afraid to lean on your loved ones and ask for help. I look at it as, as long as I am always there for them and support them it’s a two-way street and I should not feel bad for asking for help or leaning on them when I really need a helping hand or a shoulder to lean on. I would gladly do it for them.

    I also never really had time to mourn or say goodbye to my old self as I don’t really remember my old self. Even as a child I also had a ton of issues. I hid them then as much as I tend to hide them know so I really feel you on this one. If it’s all you ever have known it’s hard to miss or say goodbye to your old self as you either never knew your old self or just never had a chance to really see the difference (if there ever was one).

    “One day I might be good enough to join my mother for a nice walk around the neighborhood, but another day I can barely hold my cellphone to text her.” This is my case too, It’s hard because people don’t understand how we can be well and good one day and be out doing things and having fun and then the next we are so sick we can barely lift our heads off of the pillow.

    I actually have the exact same conditions you have, plus diabetes and possibly other things. I feel like there is a new diagnosis or a new symptom almost every week. So frustrating! I am glad to hear you won’t hide it anymore or lie to yourself or others about it. I think lying to ourselves hurts us the worst. I don’t know how many time’s I have said to myself, “Oh, I’m fine. I can do this today. It won’t take much out of me. I just need to push through and it’ll be fine. I can ignore this.”, but you can’t it just means that you are hurting yourself even more so then you are hurting others.

    I am learning slowly to take it one day at a time. To know my limitations. I am not afraid to push them a little to try and keep myself somewhat active and to enjoy my life and have fun but then I also know to plan for the consequences in advance. I.e. if I am doing something I know might take a lot out of me, I will plan ahead for it, take some Advil or Tylenol to at least try and dull the pain I know is to come and then plan to pamper myself when I come home with a hot bath or shower, a massage from the hubby, heated blanket, etc and also do it when I have nothing to do the next day so I can recover or I take a day off if I can by trading a shift or whatever. I make the most out of the good days and make the bad days, days for recuperating and knowing my limits and not overdoing it.

    I am glad that you are proud of yourself. You should be. Finding ways to smile and enjoy yourself is the key and I find so many of us that suffer from chronic pain and illness just give up and give in, it’s tempting at times but then I remind myself I only live once, so I need to experience what I can and enjoy as much as I can but that it is okay to have bad days, and it’s okay to need help or even to just want to be left alone. It’s okay to not be okay sometimes.
    Kirsten recently posted..The job hunt & schoolMy Profile

    • Holy crap I am sorry I did not realize I wrote that much!

    • ongaku ongaku

      Haha, long replies are awesome! Thanks for sharing your story as well.

  2. I know how you feel with regard to being afraid to post stuff like this. Sometimes I hold myself back from writing about some things.

    Anyway, man the stuff you have going on sounds awful. But kudos to you for still trying to work, and just not giving up. Some people probably would. I love your attitude too. You still try to stay positive, and try to take care of yourself first. Very important! Glad you do have nice supportive people to help too. That can be hit or miss.

    Aw, bladder stuff. I feel you there. Over the summer I kept getting infections and going to the bathroom a lot too. I’m apparently very prone to them, and so they keep me on antibolics to keep it at bay. XD If I don’t the systems come right back. So I do feel you there.

    Please continue to take good care of yourself!

    • ongaku ongaku

      Yikes! Bladder infections often have to suck! I just warn you, be very careful with how often you are put on antibiotics or you will end up with something even yuckier… C.Diff.

  3. I too, live with chronic illness: DDD (basically osteoarthritis) and sciatic at age 30! And I have to couple that with my mental illness and it gets a bit scary at times because of how easy I can hide it and play it off with all the medication that I am only taking for my mental illness.
    My husband has been supportive through this and I understand support is what we really need in all that we suffer from. You and me.
    I think that by managing and doing what we can to help ourselves, we can feel better but honestly, having these sorts of physical and even mental illness can scare me a lot. I have to take a lot of medication just to function and I am sure that it isn’t easy to smile through it all. I’m glad at least that you’re taking this in stride and not allowing these illnesses define or contain you as a person and taking away from your hobbies at all.

    I always chant (as I am a Buddhist) for everyone’s happiness and overall general health but I know it’s difficult to fake a smile but I believe in you. It’s possible to smile and keep doing the things you love no matter w hat despite what we’re both going through.

    Much love to you.
    Michelle recently posted..Diamonds Are In My EyesMy Profile

    • ongaku ongaku

      I’m glad your husband has been very supportive. ♥

      Thanks, luv ♥

  4. This is a really well written post and it’s made me understand how living with chronic pain can have a big impact on someone’s life. I’m glad you have family and friends and doctors who will support you. It must be tough but you sound incredibly strong and still living life to the fullest – this is so inspirational. Wishing you all the best for the future Ashley, and sending lots of love to you! Thank you for sharing <3 xx

    Bexa | http://www.hellobexa.com

    • ongaku ongaku

      Thank you very much. ♥

  5. My mum lives with chronic pain & multiple auto-immune illnesses, so it’s very interesting and essential to read a post that can help me understand it a little better. It sounds like a huge struggle but you seem to be doing great at battling through it. I hope you’re okay lovely <3 xx

    • ongaku ongaku

      I’m glad this could help you understand a little more. Thank you ♥

  6. You shouldn’t ever be ashamed or feel like you can’t write about your health issues. It’s how we work through those things, which helps us realize what’s working and what’s not working with however we’re managing our illnesses. I think a lot of us that do have something wrong with us, end up being extremely humble. It makes it harder to admit that we’re struggling with something.
    Kristina recently posted..Rinse. Wash. Repeat.My Profile

    • ongaku ongaku

      Thanks, yes, that is very true. It makes it harder. ♥

  7. There’s nothing wrong with sharing your story, especially when the intent is to educate others. Just because things don’t catch on from the appearance doesn’t mean there’s nothing wrong. It is good that you’re not going to hide it. Sending you all of the positivity you need to keep pushing forward!

    Nancy ♥ exquisitely.me

    • ongaku ongaku

      Thanks, yeah I’m glad I’m being more honest with my pain and issues. 🙂

  8. You can write about anything you want on your blog. It is your life and your blog. I am sorry that you suffering. I have never suffered from anything like that. I can only imagine how you feel. ((hugs))

    • ongaku ongaku

      Yup! That is what I should be doing. Thank you ♥

  9. Thank you for sharing your reality. Sometimes reading about the experiences of other people who share the same or similar problems can be healing. I hope through sharing this that other people will be able to understand the struggles for many people.

    Your post was inspiring to me, as someone with a chronic condition. I have a mental illness, and while I don’t hide it, I haven’t been as open as I want to be. There is a lot that people do not understand. I have had similar instances where people have made comments when they do not realise the depth of the condition (or at all). I might try to educate them in some way, but if they are not willing to see a different perspective, it is not worth the time. Walking away, as you said, is a good option!

    • ongaku ongaku

      Yes, mental health is brutal and so many people do not understand it. I have family who suffer with it and I just do my best to be supportive. Thanks for reading my story. ♥

Leave a Reply

Your email address will not be published. Required fields are marked *

CommentLuv badge