This pic is definitely my today

Posted on by chronicallyill89


Ugh what a day today. I slept really bad last night (overthinking is a b*tch!) but didn’t feel that bad this morning. After a few minutes at work I just started to feel so low. I haven’t felt this low in a while. I just wanted to burst into tears at any moment! One of my colleagues asked if I wanted a hug and I knew if I said yes I would just burst out crying. I was just sluggishly getting through the day. Then towards the end of the phone, I was on the phone and just burst into tears. I was so embarrassing! Lots of girls have cried before at work but I have never done it! Until today that is 😦 my manager was just heading out but thankfully came back and dealt with the phone call. He was rushing off as he had to go somewhere but came back five minutes later as he didn’t want to leave me as I was. We ended up having a good 45 minute just about everything. I had been on edge all day and it was kinda nice to just have a cry and a chat. I think over-exerting myself has really had a knock on effect on me both mentally and physically. These last few weeks have been busy and I think I just need to rest and look after myself a bit. I’m hoping I will feel a bit better over the next few days….lots of time in bed I think! 

Oh so tired

Posted on by chronicallyill89

My god I feel like I’m dying today. I have been out more so than usual over these last few days (yay!) but it has definitely caught up with me now (boo!). I came back from a pretty busy day at work and couldn’t stop yawning. Felt like a zombie so no food or anything, just straight to bed and I was asleep in seconds. Having just woken up I feel so rough and tired. This is definitely the overdue tiredness that I thought I had escaped from using too many spoons on Sunday and yesterday. I should know better than to think I can escape the tiredness that using too many spoons will bring. 
Thankfully I have had some good news from Dr C recently. My biopsy didn’t show any active reason for concern so just monitoring for now….and most importantly, FINALLY, off most of my medication. God it felt so nice this morning to just take one tablet rather than a handful of 7/8. Fingers crossed things keep improving. Just need to get through this horrible tiredness. Think tomorrow is going to be a day spent in bed to recover. 

When I Feel Like Everyone Moved On While I’m Stuck in My Life With Chronic Illness

Posted on by chronicallyill89

Article from http://themighty.com/2016/04/feeling-stuck-in-life-and-left-out-with-chronic-illness/ that u can definitely relate to in many ways. 
Have you ever felt like everyone has moved on after something huge has happened, but you haven’t yet? That feeling like you’re getting sucked down by this enormous event — as if you were stuck in quicksand — and everyone just keeps walking and they don’t look back? They just assume you’re keeping up the pace with them? Well, that’s how I’ve been feeling.
I realize my being ill will obviously affect me in a very different way than it will affect anyone else. I say obviously, but when someone is in a situation where they are dealing with something of this magnitude, what seems obvious to them may not, in fact, be obvious to those around them. At the end of the day, all I want to do is move forward in this journey, just the same as everyone else. Instead, it seems as if I’m stuck in this huge pit of mud and I have no clue how I’m going to get out any time soon.
I’ve had a difficult time finding a balance between trying to live a “normal” life and actually talking about what I’m feeling and what I’m going through. Should I actually talk about what’s happening in my life, or would it be better if I just smile and nod along as if nothing has changed? How much do people really want to know about what’s going on in my life when they ask me how I’m doing? I don’t want to lie and say I’m great (an answer I haven’t given in roughly 11 months), but I also don’t want to be viewed as a “Negative Nancy” and always be the one bringing the mood down when I give a more realistic answer to such a simple (for most) question. My go-to answers of late have been either a simple “Fine” or “Oh you know, just taking it one day at a time.”
I guess I’m finding it challenging because everyone seems to have gone on with their lives. Meanwhile, I face this every single day. I can’t escape the reality that things have changed. Even if I am having a good day pain and energy-wise, I am faced with the reality that my life will never be the same. At the end of every day, I still need to head upstairs approximately 45 minutes earlier than whatever time I figure I will actually want to be in bed. That’s about how long it takes me to hook myself up to my IV bag, give myself my injection, take my medication and then after all that, go through my normal bedtime routine. My good, normal day has all of a sudden come to a halt and I have been brought back down to reality.
Just when I sometimes feel like I’m maybe finally getting used to this new normal, something happens to make me realize all over again that my life has been forever changed. Something as simple as taking my daughter to a jungle gym for one hour sent me to bed at 6 p.m. that day, and it took me 48 hours to recover — making me realize yet again that my life will never be the same.
Allow me to clarify that I don’t expect people’s lives to revolve around my situation. I would never want it to be that way — people all have their own lives to live. I just want to get unstuck from the muck, catch up and move on with everyone else.
Even though I may seem better, it’s an illusion that I have been able to put on. I make sure that I look good when I leave he house as I don’t want to look sick. I also don’t let people see me on my really bad days. I still struggle on a daily basis with my health, my energy and most of all, coming to terms with my new normal. I will never be able to keep up with everyone anymore, but I don’t want to miss out on more things than I already am. I have felt very left out and forgotten about since becoming sick and I’m so afraid that these feelings won’t go away.
If you think of me, text or call me. If you want to have coffee, make plans with me. Just because I’m ill, doesn’t make me a pariah. And I promise, if I’m not feeling well, I’ll let you know. I am literally unable to do more than what my illness will allow. I just ask that you understand, and please, please don’t give up on me — it’s taking everything in me to not give up on myself

What chronic fatigue feels like 

Posted on by chronicallyill89

These are from: http://themighty.com/2016/02/18-pe0ple-describe-what-chronic-fatigue-feels-like/
My god I can especially relate to 4, 5, 10, 15 and 18. 

1. “The best way to describe chronic fatigue is looking through a foggy glass every day. Nothing ever seems real; it always seems dreamlike.” — Kathrine Elise

2. “It feels like I have concrete in my veins. My legs are heavy and my arms do not want to move. I ache. Trying to fight off sleep is fruitless sometimes; best to give in before I pass out.” — Judith Brain

3. “Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100 percent. But when you wake, it’s only at 9 percent and you have to try and function on that 9 percent. You’re never fully charged.” — Michelle Lewis

4. “Chronic fatigue feels like I’ve gotten hit by a truck. It doesn’t matter how much sleep you get. My body feels heavy, and it’s a struggle to have the energy to do anything.” — Megan Rosvanis

5. “It feels as though days have no beginning and no end. Very much like not being able to participate fully in your own life due to the overwhelming weight of the perpetual, debilitating exhaustion.” — Kaitlyn Michaud

6. “I often feel like a limp dish rag. It’s hard to put one foot in front of the other and to sit up for long.” — Sharon Anderson

7. “It feels as if you are walking through mud. The mud is up to your waist and you can hardly move your legs. Your eyes feel like they weigh 100 pounds and you can hardly keep them open.” — Hannah Waldron

8. “Fatigue is an invisible full length cloak, weighted all around so your reality is this heavy, filmy, dense shroud. Wearing it constantly saps your energy, but there is no clasp to remove it from your body. It makes movement slow, awkward and exhausting. The cloak of fatigue grows tolerable at times, but there is no shrugging off the weight completely.” — Erica Cai Fish

9. “It’s like swimming upstream every moment you’re awake and your brain is in a fog like when someone hasn’t slept for two to three days straight.” — Oriana Hill

10. “No amount of sleep I get will be enough. That feeling people have first thing in the morning after a bad sleep is what I have all day, every day.” — Calliope Krystal Pia Kilpeläinen

11. “A cross between the flu and being intoxicated 24/7.” — Twilight Maher

12. “It’s like when Superman gets to close to kryptonite. It feels like the energy is literally being sucked out of my body.” — Ashley Garcia

13. “It’s like a cross between a pin cushion and a tanker running over you 10 times forwards and backwards, plus a fluffy cloud inside your head not deflating until you move… then pop!” — Robyn Ager

14. “Imagine having to lean against your desk at work in order to sit up, and having to prop yourself up on your forearms at the sink so you can wash dishes, budgeting trips up and down stairs and having to rest after you shower.” — Eleanor Martino

15. “It feels as if you moved an entire house full of furniture up five flights of stairs by yourself.” — Denise Noble Hall

16. “Doing everything a ‘normal’ person does… in a vat of Jell-O.” — Emily Matejic Souders

17. “Like the sun never comes out, the Folger’s never brewed and like I live in a constant fog.” — Tiffany Irvin

18. “Walking for five minutes feels like running a marathon.” — Sarah Norfolk

Here I am again…

Posted on by chronicallyill89

  Here I am again. Back in hospital (hopefully only for the day though) for my latest biopsy. It will be my fourth biopsy in the two and a half years since I’ve been diagnosed so it’s something I’m fairly familiar with. Am feeling rather uneasy though as the last time I came in just for a biopsy I was admitted for a month! I think my mum shares my fear as she was rather emotional this morning before I left for hospital. What did make me smile today was yet another nurse making a comment of how well used my veins are! Well what do they expect when I have blood tests pretty much every other week for nearly three years! Anyway, fingers crossed I’m back in my own bed tonight!

What chronic fatigue feels like

Posted on by chronicallyill89

These are from: http://themighty.com/2016/02/18-pe0ple-describe-what-chronic-fatigue-feels-like/
My god I can especially relate to 4, 5, 10, 15 and 18. 
1. “The best way to describe chronic fatigue is looking through a foggy glass every day. Nothing ever seems real; it always seems dreamlike.” — Kathrine Elise
2. “It feels like I have concrete in my veins. My legs are heavy and my arms do not want to move. I ache. Trying to fight off sleep is fruitless sometimes; best to give in before I pass out.” — Judith Brain
3. “Imagine plugging in a dead cell phone over night. When you awake, you expect it to be at 100 percent. But when you wake, it’s only at 9 percent and you have to try and function on that 9 percent. You’re never fully charged.” — Michelle Lewis
4. “Chronic fatigue feels like I’ve gotten hit by a truck. It doesn’t matter how much sleep you get. My body feels heavy, and it’s a struggle to have the energy to do anything.” — Megan Rosvanis
5. “It feels as though days have no beginning and no end. Very much like not being able to participate fully in your own life due to the overwhelming weight of the perpetual, debilitating exhaustion.” — Kaitlyn Michaud
6. “I often feel like a limp dish rag. It’s hard to put one foot in front of the other and to sit up for long.” — Sharon Anderson
7. “It feels as if you are walking through mud. The mud is up to your waist and you can hardly move your legs. Your eyes feel like they weigh 100 pounds and you can hardly keep them open.” — Hannah Waldron
8. “Fatigue is an invisible full length cloak, weighted all around so your reality is this heavy, filmy, dense shroud. Wearing it constantly saps your energy, but there is no clasp to remove it from your body. It makes movement slow, awkward and exhausting. The cloak of fatigue grows tolerable at times, but there is no shrugging off the weight completely.” — Erica Cai Fish
9. “It’s like swimming upstream every moment you’re awake and your brain is in a fog like when someone hasn’t slept for two to three days straight.” — Oriana Hill
10. “No amount of sleep I get will be enough. That feeling people have first thing in the morning after a bad sleep is what I have all day, every day.” — Calliope Krystal Pia Kilpeläinen
11. “A cross between the flu and being intoxicated 24/7.” — Twilight Maher
12. “It’s like when Superman gets to close to kryptonite. It feels like the energy is literally being sucked out of my body.” — Ashley Garcia
13. “It’s like a cross between a pin cushion and a tanker running over you 10 times forwards and backwards, plus a fluffy cloud inside your head not deflating until you move… then pop!” — Robyn Ager
14. “Imagine having to lean against your desk at work in order to sit up, and having to prop yourself up on your forearms at the sink so you can wash dishes, budgeting trips up and down stairs and having to rest after you shower.” — Eleanor Martino
15. “It feels as if you moved an entire house full of furniture up five flights of stairs by yourself.” — Denise Noble Hall
16. “Doing everything a ‘normal’ person does… in a vat of Jell-O.” — Emily Matejic Souders
17. “Like the sun never comes out, the Folger’s never brewed and like I live in a constant fog.” — Tiffany Irvin
18. “Walking for five minutes feels like running a marathon.” — Sarah Norfolk