Hi everyone! I’ve been wanting to write about this for a while as I don’t think Undiagnosed chronic illness’s get written about very much. I think it will help me to get it out in writing more than it ever has in words and maybe it will help others going through the same thing to hear that they are not alone. This may be difficult for some of you to read.
I have been living with undiagnosed chronic pain for as long as I can remember, but it would be very difficult to fit around 8 years into one post, so I will write about my worse symptoms for now. I have migraines, chronic fatigue and joint problems amongst other symptoms. In the beginning when I was around 10 (I am now 18) the pain was somewhat mild with tiredness, headaches and fainting episodes and I was told by my doctor at the time that it was not worth getting an MRI scan as nothing would show up. When the pain persisted I was given an MRI scan which revealed lesions/patches on my brain. I was told they would have to develop for diagnosis. But that doesn’t help the pain or make it go away.
The migraines can be so unbearable that I want to hit my head against the hardest surface I can find but I stop myself. When I’m okay I cannot imagine wanting to do this but in the moment it feels like it would be my only source of relief. Like all the pressure building up will pour out. It feels like my head is being crushed. Some things can’t be described and one of those things for me is migraines. They have grown to be a completely different entity from headaches and won’t go away. They come at varying degrees of pain nearly every day. Sometimes they burn like my brain is on fire and sometimes I feel like I’ve been hit over the head with a bat. I get them so much that I am almost accustomed to having them and it feels strange without them, like I’m drugged because I’m used to it all. I sometimes don’t know how to act when I feel okay. It may sound weird but feeling okay is not the norm for me and it feels slightly alien.
At times I can be left not being able to move, speak or even cry. All I can feel is the pain as numbness and tingling spreads and I’m left lying down waiting for the pain to pass as that’s all I can do. Pain killers occasionally help at night time when I’m resting in the dark. I can wait for days, even months for the pain to go away and even then fatigue overshadows everything I do. There are times when I feel as if I live in a daze or revert back into childhood and my movements are exaggerated and my thinking scares me. Other times I can’t even think at all. My mind slows down or stops completely.
I’ve been told all I can do is pace. At times I test my limits out of annoyance because I am sick of this steady pace that my life must live in. If I am not able to think, move or feel parts of my body I will make use of the times when I can and I won’t give in to it. At the same time, I won’t fight it as that only makes it more painful later on.
It’s annoying to have people look at you and think nothing is wrong just because they can’t see it. Those who are close to me see it and know when I don’t feel well before I even do, by how exhausted I look or strained. Those people obviously don’t know me if they don’t see it because I put on a show around strangers and automatically hold back the pain until I am comfortable around those I love. I can’t help it and it makes it worse because then I’m straining all day. I hate not knowing what’s going on inside me when the pain gets worse and I know something’s not right, but there isn’t a name to label it as of yet. It’s different from my TMJ which I spoke of in my Blog-aholic award post, reflux and Raynaud’s because I can manage those things as I know what they are and have been given stuff to help them.
I now realise that my illness is the biggest reason I started blogging. I can go days and weeks where I am unable to do anything because of my health, but this blog is something I can control.
Recently more symptoms have arrived that I am frightened about. A couple of weeks back I had what my GP later told me was a mini seizure. I was talking to my dad when I felt a strong stinging pain on the left of my head and stiffness on that entire side of my face. I felt confused and as if I had lost a moment of time where I was being spoken to and then I wasn’t. The stinging faded but has left me with a stiff and now slightly lopsided face which is becoming more prominent. I am going for another MRI next week to see if there have been any changes and am keeping a positive mindset because I have learnt not to jump to conclusions in terms of a diagnosis.
When I say I am thankful for your likes and comments I mean it allot because I never expected to be doing something like this. Something that steps in the direction of what I want to be in life which is an author. This is something that’s not centred around education, like my homeschooling was, which felt never-ending (I spoke of this in my post Overcoming My Shyness). I cannot tell you how good it feels to put this in writing and not have to say it all again like I do every time I go to the hospital. It is out in the open and I don’t regret it one bit! Because that’s one of the many things a blog is for. Speaking out about a subject that you know is personal but doesn’t have to be, because lots of people are going through it too. Speaking out in hope that there is at least one person who is either back where you started or currently in a similar situation and telling them everything is going to be okay. I don’t know your situation and I am for sure not a doctor or else I wouldn’t be in this mess 😂 but it will be okay or as close as it can get as long as you stay strong! 👊 I am extremely grateful to my family and my friends for keeping me sane or else I fear I would have spontaneously combusted by now out of sheer frustration! 😂 I hope my appreciation shows towards those I love because it is massive! And I can only dream of being able to repay it 😊
Thank you for staying with me! With both this post that you may have found difficult to read and my blog. I cannot put into words how happy you make me feel! I will continue to write if I have any say in the matter! 👐😄