This week my main symptom is head pressure.
God it makes you want to scream when you move, get up or suddenly move your head. It vibrates and pulses so hard that you really do feel as if you head is going to explode.
I have suffered with migraines for many years now but never this pulsing feeling. I know it’s the full moon and that is why symptoms are flaring but why my head?
For many months now I have worried that I don’t feel as sharp and on it as I used to. Conversations are harder and talking become more of a challenge rather than automatic.
I’ve been told I am fine, it’s just tiredness and so forth. Which I believed and hoped to be true.
Especially my head symptoms seem to be getting worse and more intense. My stomach has also been swollen and sore this week, my throat has been swollen regardless and of course my right joints have made it fun getting up and down. I feel tired and it took me until noon to face today. I said I would get up no matter what last night but this morning when you feel so rubbish and sitting up is a challenge it was just best to stay where I was.
I often moan about days like today the days the symptoms are so very present. You know deep down something is hammering away at your core and affecting you in ways you can’t prevent. Yet you have to smile be normal and ignore them like they aren’t killing you.
People are often quick to judge. Just stay in bed, get some sleep, try new treatments. Their advice is always from the heart and kind but if only it was that easy.
I don’t live perfectly, nobody does. I know I could do better with managing my illness. I am only a 24 year old woman however trying to tackle a disease that is widely dismissed and unknown. Seeking help isn’t as easy as popping to the GP and grabbing some antibiotics. It’s the weekly grind of bloods ad explaining again and again why you feel so rubbish. Their replies are always the same. I am either too much of a complex issue and should talk to my professor or I am crazy.
They try to silence me with tablets but never looking at the dangerous cocktail they are giving me. It’s just a quick way to give me an answer they think I will buy and getting me out the door.
Right now with the way my head is feeling I do feel like I am losing my mind and that is the scariest thing imaginable.
We have to do our own research and speak to others going through the same troubles.
When you are told that you need to add my turmeric, cinnamon and ginger into your diet to lower inflammatory in the body but you are covering you food in the stuff then you get upset. You feel more trapped than ever.
It’s hard for loved ones to cope with me and especially on my bad days. I do have myself to cope with on my bad days and blimely that’s hard. I try and make the good and bad days worthwhile. Even when I don’t want to eat because I feel sick, I don’t want to cook because I am exhausted because I refuse and am far to stubborn to admit to the hurdles my disease is trying to place infront of me to bring me down. I fight so hard to be normal. I get critical of myself and my work because I want to be enough, even on my bad days. To be of use, have a purpose and self-worth.
Our bodies can become plagued and weak but when your mind becomes affected that is when you start losing you.
I am a hoarder, believing that I will once again fit in clothes, be well enough to use things and so forth. I have taken losses in my life in a complex way. Losing them before I believed I would. I was told by so many they would stand by me and when it got tough they walked. so now I cling to everything . Maybe believing at some point they will save me. I don’t see that everyday I save myself. I need to learn to let thing go. If they were meant to be they will come back, if it wasn’t better things will come through.
When speaking to many about my work it gets dismissed because I do it out of my own heart and to fight for people suffering like myself and myself. They chose to walk away, carry on living and the minute I begin standing up for myself they ‘laugh’ it off.
They counted me out.
My stubborn heart insists I prove everyone wrong and that is what drives me everyday but that stubborn heart can also cause great pain when you are feeling less and less like yourself. It’s harder to just live let alone be productive.
Maybe these symptoms are bringing to the surface my biggest fears. Losing myself and becoming worthless.
I question at social events if people enjoy my presence - am I enough.
I am so used to be invisible dismissed, left out or replaced that I fight everyday to try and build a mini empire that defines me. Even since I was a teenage I wanted to build my own success as an individual woman. Rather than just going straight into the family business as people would expect of me. I made my mind up back then that I would be known as Sophie Ward. Myself, not the daughter of, the sister of. But me! Me. Someone that people couldn’t dismiss or replace as they had in the future.
I didn’t make room in my plan for illness and there arises the problem. I battle everyday with my body because I work to my plan not my new situtation.
I get excited about telling my loved ones of new projects and work. They never quite match up.
I know the more my mind becomes infected the harder and harder my goal will be to reach. It’s scary. It’s hard.
I have always been the underdog.. and I guess that is what I have to come to terms with being. My work or worth ethic is no less than anyone else’s. I do work hard and I wouldn’t have it any other way.
I just have to wait, work and hope for my day.
My set backs knock me off balance but they never fully knock me down.
My mind has to keep with me. It’s the key to my craziness. The doctors especially wouldn’t know what to say if I actually did become crazy.
I will fight and fight again and again.
I hope these symptoms lighten in the next week. I hope for a good,surprising week.
We hope, we must keep hope.