I feel I have so much to say, so much to write, so much going on in my brain that I feel the need to de-clutter, by putting it out there and in writing I’m hoping to create some space for more positive thoughts maybe and inviting people to understand me a bit more.
Just lately my pain scale has gone through the roof, which is strange considering a terrible flare is usually caused by freezing cold weather conditions and it’s actually been quite pleasant spring weather, I feel every inch of pain the allodynia from brushing my hair and the feel of the brush on my scalp to brushing my teeth and feeling the bristles on my gums making them bleed, I feel the swelling in my ankles and my legs swelling over my ankle boots to the feel of my watch becoming tighter over the course of the day causing remove it by 1pm. Each time I bend my leg in the walking motion my knees pain, pain like I’ve not experienced before I think I have arthritis creeping up in my knees hence why the pain is more intense now in that area, but judging by the swelling around my ankles and my knee joints, that’s looking likely, when I sit down, when I stand up my back creeks almost feels as though its broke in one place, so another trip back to the GP, will I ever feel ok…just one day I would like to remember what it felt like to be me.
Each morning I wake up and apart from looking in the mirror for myself to which I still haven’t found, I feel like I have the worst kind of muscly ache flu 24/7 365, I cannot remember the last time I went to sleep and stayed asleep until a reasonable time, I cant remember the last time my mind felt clear, free from fog, free from glaze, free from migraine. I have to sit on the edge of my bed to prepare myself to stand up and just pray that my legs are going to work whatever pain scale my body decides to be I know I have to just suck it up. Just lately I wake, I drink coffee, I take my pain meds, I shower, I put my hair in a scruffy bun, get dressed, brush my teeth and leave the house half looking like I’ve been dragged through a bush, Where has Nicola gone? Before people make judgements on the appearance of people like me, stop and think what strength it has taken for that person to actually get out of bed today, what strength has it taken them to make the extra steps to still go to work so they can provide for their children while they can. Don’t knock us! It is true what they say Fibromyalgia is a debilitating invisible illness that people underestimate and it is so frustrating that we sometimes get questioned about the level of pain, we get judged and almost accused of exaggerating, why? because it’s impossible to feel so much chronic pain? Some people hide it better than others and it very much depends on the scale of allodynia. Fibro makes it almost impossible to be close to anyone, it causes lack of intimacy, insecure feelings, the lack of love you always feel because you know that as much as people say they understand I think its almost impossible to understand the level of pain and everything else that comes with it unless you have experienced it yourself, one of the biggest judgements people make is that “oh she looks ok”. NO I am not ok and it is ok to not be ok! When you support someone, be supportive of them, be patient, because the level of pain is only something you never imagine, its a constant pain throughout your whole body.
I have been doing and lots of research surrounding Fibromyalgia and I’ve found lots of interesting information, there are lots of people out there like me that is suffering and what I have learnt is due to the isolation that this illness causes talking via typing is a very therapeutic method to calming and offloading negatives thoughts in your mind.
Fibromyalgia comes in stages maybe not be in the same order but at some point you may or may not experience all or some of these symptoms.
- At first you may notice persistent pain – could be pin points or wide spread pain
- low mood and lack of interest in hobbies, socials, seeing family and friends.
- Putting things off, isolating yourself
- not getting out of bed
- taking time of work
- stress, anxiety, anger and frustration
- negative thinking
- weight loss or gain due to medication
- loss of feeling
- pins and needles
- loss of fitness
- Chronic Pain
- feeling confused
There are people I feel I owe explanations to because I love you.
Apologies to the closest people around me and my family who I have been distant to, Im going through something that I even cannot describe myself. I am sorry if you feel its because I don’t want to be around you, I promise you its not that, I need to overcome what this is, get through this pain and concentrate on becoming stronger and healing. Im sorry if you need me and I’m not there.
Apologies to my beautiful god daughter and my little cousins and a special little boy in my heart who I vowed to love and protect, but truth is I can’t even protect myself, I am sorry that I cant do play dates as often as I want to, I’m sorry I’m not the fairy god momma I always wanted to be and I promised you I would be, but when I am feeling better I promise I will make it all better and make up for loss time. If not im sure you will have fun pushing me around in a wheelchair. 🙂
Apologies to all my friends who I don’t see very often but I could, I am sorry that I cancel on you guys, I apologise that I’m not there for you like I should be and just like you are me. I am sorry that I am such a rubbish friend at the moment. I just hope you understand and find it in your hearts to love me either way, which I have no doubt that you will because of the kind loving people you are and that’s why I love you.
To all my work colleagues who occasionally have to pull my weight as much as theirs when I’m not physically able to I thank you and I am so sorry because if It wasn’t for you guys I wouldn’t be able to do my job, if it wasn’t for you lovely ladies I would have failed, cracked up and lost the plot. I apologise for having to put up with my huffs and puffs, my sighing and moaning and general miserable sad face, it must be so deflating having to hear and see it all the time, so thank you guys I love you.
Apologies to all the mums that I quickly rush past with my head down at the school lately that I would normally talk to, apologies to all the people at the school I would normally have general chit chat with, Im sorry if I have looked straight past you and not even said hello, I don’t know half the time what I am looking at, its scary its all a blur. By the school run time my meds are wearing off and I’m feeling the need to strip off because the pressure of the clothes on my skin is making me feel a tad psychotic.
And I apologise to my sweet, kind, caring and understanding babies for not being the mother that I hoped I would be, to say I am proud of them is an understatement, I feel that they understand me, they understand my illness, they know when I am in pain, they know what to do, they know what I need and they give me nothing but love and support, they are there at my beckoned call but it should be me there for them at there beckoned call but that depends on my scale of pain. I am sorry that I shout, I get frustrated, I am sorry you have to witness me cry, I am sorry that you have to see me with my low moods and see me frustrated when I cant do things for myself, I’m sorry that I’m not the same playful mummy I used to be, I always wake up and wish that this is a nightmare because this isn’t how I wanted things to pan out, I’m sorry that were not able to make many memories together, but the time we do spend together I do cherish. I love you babies and know that all the strength and courage I do have is for you.
For those that I do cancel on or I don’t have time for I am trying to use what little energy I do have on being a dance mom and a football mom, so that my babies can make their own little memories in their own little worlds, so they can look back later on in life and remind themselves of their amazing achievements and I am so proud of them for that and all I can ask is that you are proud of me for that too, I have to remind myself sometimes I am not the robot I once was and this is why I am in this position for not listening to my body!
Lots of Love and peace always