Friday, 9 February 2018

Living With A Chronic Illness


The best thing about running my blog is being able to talk about my own experiences and the things I deal with on a day to day basis. When you’re in your 20s, you would think that life is about going out with friends, travelling, partying and diving right into your career but when you have a chronic illness, that isn’t always true.

Normally, when you’re unwell, you go to the doctors, get a diagnosis, get some medication and you’ll be fine. With a chronic illness, it doesn’t quite go like that. It’s like you wake up one day to be told that you’re sick and you’re never going to get better. Explaining to people who aren’t sick or who do not understand chronic illnesses can sometimes be difficult but I’m going to try and make them understand better. I often forget that before I was diagnosed, I had no clue about being a ‘spoonie’ or invisible illnesses myself. 

I am so much more than just tired. 
When I tell you that I am tired, I do not mean that I will have a quick cat nap and I’ll be fine in half an hour. I mean that I am exhausted and I need to sleep. The way I explain fatigue is like wearing Harry Potters invisibility cloak but with it being drenched in water, so it’s weighing you down but no one can see it. 

I plan my life around my illness. 
I hate cancelling plans on people but sometimes there is nothing that I can do because my body is too tired or I’m in too much pain to function. I have to say no to certain events because I don’t know how I’m going to be whilst travelling there and I feel like I’m losing out on great opportunities. With every action and every step that I take, I’m always thinking about how it’s going to interrupt my future plans and that’s exhausting within itself. 

My friends are having babies and I’m having doctors appointments. 
This one frustrates me a lot. I get annoyed sometimes at the fact that people my age around me are building relationships and having families and I feel like most of my time is spent at hospital and doctors appointments. I have seen over 19 doctors in the last year and have been to the hospital over 7 times this year alone. 

Needing help & managing pain. 
I am 22 years of age and sometimes I can’t wash my own hair by myself or take my top off. You feel embarrassed because you’re an adult and should be capable of doing simple tasks but sometimes it is impossible. I will smash and drop glasses because my hands can’t seem to grip them properly. The pain can go from being a 2 out of 10, to a 10 out of 10, out of nowhere. When I have relapsed, old and new symptoms appear and it still feels like a pain that you’ve never experienced before. With my condition, my neck and shoulders hurt to touch, my spine and lower back feels like it’s crumbling, my arms ache, my legs burn, I get pins and needles and electric shocks running through my body and a severely tight chest.  

I am not lazy. 
When you’re young, people look down at you and think because you look able, that you are able. People constantly tell you to keep moving, keep active, even the doctors who specialise in your illness but do not have the illness themselves. Please understand that I’m taking the lift because my legs burn and not because I’m a lazy ~ 20 year old ~ something. 

Being anxious about whether your health will improve. 
You don’t know whether this is going to be the healthiest you’ll ever feel and that the progression of your disease is going to get worse. So you start to live your life in fear and become anxious about whether you’re ever going to live your life to its full potential or if it will be a lifetime of pain, fatigue and hospital trips. I’m constantly worried that whenever I start to feel a rush of intense pain or fatigue, that I’m having a relapse and more lesions are appearing on my brain. 

Sometimes I get sad. 
Amongst physical pain, there’s a lot of sadness and emotional pain that comes from being chronically ill. 
“Get well soon” is something that I hear a lot and it’s so frustrating knowing that you’re not going to get well. I mean, some days I feel better than others but the underlining issue is still there and do you know what? Sometimes I can’t cope with it. Sometimes I get angry and I cry, sometimes I blame the whole entire world for what’s been handed to me and I think that life is really unfair. 

I think that everyone with a chronic illness can find it very isolating and difficult at times. You feel like a burden around your friends, you don’t want to talk about your condition too much but you also want people to understand that it’s real and it’s not in your head. You feel like you’re trying to keep your head above water but are slowly drowning and sometimes you feel like you’re screaming but no one can hear you. But it can also be a great eye opener of who you can rely on and who is supportive of your condition. Being diagnosed with Multiple Sclerosis has been the hardest thing I’ve ever had to go through and unfortunately, until they find a cure, it is something that I’m going to have to deal with for the rest of my life. However, it’s made me want to take care of myself a lot more, take care of my health, spend time doing things that relax me or make me feel good and I also think it’s made me a lot more compassionate. Not everyone is going to understand your condition but those who matter, will. 

I do hope this gives you a better understanding of chronic illnesses and what we.. or I, have to go through on a day to day basis.

This is my life with a chronic illness. Tell me about yours?

Charleigh
xo
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10 comments

  1. Hi, charleigh! I also have Multiple sclerosis-was diagnoses March 2017- and from reading your blog posts, we’ve experienced all the same symptoms. I’m on tecfidera and it’s agreeing with me so far but as you know the symptoms still exist. However, compared to how I felt a year ago I definitely feel a lot better. So coming from someone who is in your shoes, please know you will have better days. Sending lots of love, Elisa xx

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    1. Hey Elisa, Thanks so much for commenting. How long have you been on Tec for? I'm going back on it on a low dosage as I reacted to it badly just before Christmas. Then i'm moving onto Lemtrada as I've had another relapse!

      Glad you're doing a lot better than a year ago, lots of love xxx

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  2. I'm living with an autoimmune disease and its hard. My family doesn't understand what a chronic illness is. Some days my legs are burning, some days my shoulders hurt, some days its muscle spasms and body twitches, some days my body aches and my nerves are burning all over. The doctors tell me this is what I have because they couldn't find anything under the microscope. When I have a flare up I cry in bed and I feel super frustrated and alone. Luckily my boyfriend is here for me. I get so anxious thinking about if this is the the extent of my illness or if its going to get worst. That's my biggest fear is that it will get worst but I'm trying to remain positive and deal with each flare up as they come. I won't lie. My flare ups are less since I changed my diet and added the right supplements. I keep a journal of what I did or what I ate before the flare up. The days I can't run errands with my boyfriend I would cry but I know now that when my body needs to rest That's what I need to do. This is a struggle but I will keep fighting. I've learned so much from the holistic doctor and I've changed what I put in my body and I know its helping heal my gut.

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    1. Thanks so much for sharing your story. Your symptoms and flare ups are a lot similar to mine. I'm glad you're learning about what helps your disease and pain management xxx

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  3. Hi, charleigh! I also have Multiple sclerosis-was diagnoses March 2017- and from reading your blog posts, we’ve experienced all the same symptoms. I’m on tecfidera and it’s agreeing with me so far but as you know the symptoms still exist. However, compared to how I felt a year ago I definitely feel a lot better. So coming from someone who is in your shoes, please know you will have better days. Sending lots of love, Elisa xx

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  4. Thank you so so much for this!
    You’ve helped me, to try and explain to others what living with a chronic illness is like. I was constantly nodding at every word. I literally couldn’t have put it better myself. I’ve had a chronic illness, since I was 27, I’m now 33.
    I’ve always had something wrong with my waterworks, urine infections always. Over the years it has damaged my kidneys. One was removed.
    I still have the condition “refluxing kidneys” and it’s now affecting my left side.
    I don’t know about you but since you became poorly, and you get quite a few blood tests, they always seem to find something else.
    I also have stage 4 endometriosis and I’ve lost an ovary because of that too.
    Thank you once again for this post - like you said just because we may look able doesn’t mean we are.
    I really hope you have more good days than bad this week. I say this week because next week can seem like a lifetime away. Lots of love Charleigh ����

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    1. Hello Hun,
      Wow, you've really been through it all haven't you?! My heart goes out to you, you have a lot of inner strength to be dealing with all of that.

      Thanks so much for commenting. xxx

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  5. I struggle with moderate to severe anxiety, depression & mild Asperger's syndrome. I have some understanding of how you may feel because it sucks that people can't see how much emotional or physical pain you're in. My cousin has MS, I know how much she's finding life difficult & she has 2 young kids. I love the saying “stay you stay beautiful” as it reminds me that no ones perfect or normal & to always be myself. I acknowledge that it's alright to make mistakes as we're only human. I struggle with back pain too due to an old horse riding injury so I know how that feels. Thanks so much for sharing your story.

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    1. Thanks so much for reading and sharing a snippet of yours <3 x

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  6. You couldn't of explained how I feel day to day better. I am 34 years old and recently been diagnosed with fibromyalgia and rheumatoid arthritis. I've become so isolated and shut myself away from the world for many reasons. 1 because of the pain or the depression and anxiety I have now developed and 2 because people just don't seem to understand what I'm going through. It feels so comforting knowing I'm not alone and there are over people out there experiencing what I am going through but I really won't wish it on anybody.
    I used to be a plus size model and won the biggest plus size pageant in the United kingdom in Sep 2015 and won the title of Miss Plus Size United kingdom 2015/16. Becoming unwell I've completely lose myself and the person I was. I refuse to give up on myself but some days I could just lock myself away in my room and wish the days away. It's the thought of never feeling the person I use to be scared the hell out of me. I totally get you my darling and you are not alone. Xxx
    Jodie Folley (bigprettyme1)

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