Shattered Dreams [EDITING] - Chapter 66: Chapter 66

NADIA'S POV:
Today I have something big going on as today I am seeing an occupational therapist for chronic fatigue syndrome. I am pretty fucking lucky because the waiting time to get an appointment to see one is up to six months and I got one through within a few days because my parents decided to go to through the private option. I know how lucky I am for that as many others in my situation wouldn't get that opportunity.
"Good morning Nadia. My name is Chloe." The therapist introduces herself as we take our seats, I place my crutches down on the floor beside me and I don't miss the way her eyes follow my actions. I decided to use my crutches today as I know how exhausting appointments can be and I am already in so much fucking pain it's unbearable to put my full weight on my legs.
"Hi." I respond back, feeling awkward as I am in here alone with her. I hate meeting new people because since becoming poorly I have become introverted, not wanting to be around too many people or meet new people at all.
"As you know I work with people like yourself who have chronic fatigue syndrome," Chloe begins, resting her hands out in front of her. "I have one question though, what is it that you are hoping to get out of today's appointment?"
I think over her question slightly because honestly I have no idea how I am supposed to answer that as I don't know. I kind of hoped that she would be the one leading the way considering this is my first appointment with her. When medical professionals ask questions I get all anxious because with the trauma I have with doctors I am so scared of saying the wrong thing so that they won't believe what I am saying.
"To have some more understanding on the condition, I guess and to find out what can be done to help it." I finally answer, not knowing if that is what she wanted to hear or not.
I hate that I am trying to answer her question based on what I think she wants to hear and not with how I want to answer it. These appointments should be about me, I already have the diagnosis so she can't take that away from me if I answer a question differently to how everyone else she sees answers it.
That's the thing with going to the doctors, they all go by a set guidelines so if one thing doesn't fit into the spectrum then your diagnosis could be missed because of it. It's annoying because if you have many symptoms of having something but are missing just one then that should still be an option, not every one person is the same. Symptoms show up differently on different people.
"What would you like to know about it?" She asks me and I could ask her a million things but I stick to the main one on my mind.
"Why did I get it?"
"It doesn't just choose someone to affect out of a long line of people, it is a random thing, just like any other illness is really," She begins, handing me a couple of leaflets that I am assuming is for me to take home and read. "Sometimes it's caused by infections and how the body uses your energy. Your body may have just responded to an infection in a strange way, you could have unknown toxins or injuries or sometimes it is boiled down to something as simple as genetics." I stare at her blankly, not really understanding a word she is saying but I nod along to be polite.
"Some studies have shown that people with your condition can experience over arousal of the stress system, which can inhabit the body from truly relaxing, even when sleeping, hence why your sleep can seem unrestful." She explains to me and this makes more sense to me now.
"So it's like when I go to sleep my brain doesn't fully go offline?" I query, trying to understand this more.
"Exactly," She agrees. "It is important that you try and manage your energy."
"How would I even do that? When I do something little I get too exhausted to do anything else." I inform her, growing frustrated because I thought she understood this illness more than anyone, since she is a specialist in it.
"Before I go through that, I need you to understand why it is important for you to manage your energy." She says and at this point I just know that she has a script that she follows for every appointment. I know that she has to give out the same advice for patients because that is how she helps us but I would rather it be an appointment based on my own circumstances, not other peoples.
But like always, I keep quiet and let her do the talking as she is the professional after all.
"When you become unwell with ME/CFS your body was clearly giving you a signal that it was struggling with the demands of your life, and this is caused by many different things, including the ones I spoke about earlier." She exclaims, taking a sip from her coffee cup before continuing her speech. "After a period of time the body is ready to start getting back on track but often due to the constant demands of our life and often vicious cycles of coping in an attempt to be better, this can lead to poor management of the available energy and place increasing stress on the body's systems."
I nod along to what she is saying because I do understand what she is saying, although she is using a lot of words to explain it so it is making my head hurt as it is exhausting trying to understand everything. She is basically saying that even though my body recovered from the infection, my body is still fighting and that is causing poor energy management.
"Often sufferers use the comparison with having a battery that has developed a fault when they are trying to explain to others how they feel when they have fatigue and why they do not just recover when they rest or sleep like healthy people do when they are tired. Fatigue is different to being just tired as your body is dysregulated and unbalanced so your energy levels seem constantly low." She carries on explaining and I must admit she is losing me a little with what she is saying. If this whole thing is for sufferers of people with a fatigue issue, then why is she explaining things as if it should be written in some Shakespearean play?
"Okay, so what can I do to help manage my energy?" I ask her, wanting to get off her long rant about explaining this stuff because it really is making my head hurt. I should've had a few paracetamol before I came here in preparation.
"The first one is being aware of your energy," She starts. "Be aware of how you're feeling, try not to let yourself get too stressed about things as this can also take up a whole heap of your energy."
"Try focusing on one thing at a time, as your mind works overtime trying to do multiple things at once which of course uses more energy than just doing one thing," She tells me and this one actually makes sense, although I don't get much chance of multitasking anything anymore.
"Breathing exercises work a treat," She says, handing me another leaflet with a bunch of different methods on breathing. "There are other things like sharing your responsibilities,meditation, games, reducing stimulants, a balanced diet, restorative rest and staying hydrated."
"The last one that I can suggest is definitely stabilising your energy. You can do this by pacing yourself, which is not actually recommended anymore as it seems to make some sufferers worse but I swear by it, but I will go through all of these steps in more detail in our later sessions." She tells me and I think to myself that if she carries on talking like this there won't be very many more sessions.
I feel a bit suspicious on whether I should really be trusting her or not. If she thinks that something that isn't recommended in guidelines anymore is a good thing then I don't think I want her to be the one dealing with my current situation as it has proven that pacing myself doesn't work. I do something small and I am exhausted, I don't do anything at all and I am also exhausted so there is no winning for me here at all.
"May I just ask what that restorative rest is?" I question her and she nods in response.
"It's a term that we use a lot and I have a whole section about it in one of the booklets I have given you," She answers and I silently sigh as I am not going to be reading a word of these as it will hurt my head because there is so much of it. "It's basically a term that is used to describe rest that is super charged and is a key rehabilitation area."
"Rest that is supercharged?" I ask and I know that I should stop asking questions because I feel a migraine coming along but the more she speaks, the more questions I have to ask.
"Rather than sitting still or lying down, restorative rest is gentle rest techniques that can increase energy levels and help your body get back in balance far better than simply sitting or lying down," She states, waving her hands out in front of her as she talks. "And some ways to do restorative rest are with some of the things I mentioned earlier. You don't have to do it for hours at a time, just minutes can be effective as it all adds up in time."
I stare at her, nodding my head in agreement as if I understand fully and agree when in reality I don't at all. In my opinion, if resting worked with fatigue then restorative resting would work too but resting doesn't, so why would this?
"I'm going to set you a task to do for me before our next session. I would like you to go out for a walk everyday and slowly build it up each day to get your energy levels up and see how much better you feel." She tells me, writing it down for me as she speaks.
"Okay." I agree, not wanting to take part in it at all but I will do it just to prove to myself that it doesn't work and if it does work I'll be the first to kiss Chloe's feet.
"I also want you to think happy thoughts as you do this and whenever you get to a point in your pain and fatigue when you feel like there is no escape." She tells me, as if it is this sort of revolutionary advice.
I don't understand how me thinking happy thoughts is even possible in a situation where I am screaming in pain. How can I think of anything other than the pain? In my mind it is impossible. I have tried to take my thoughts away from the pain, but it doesn't work. Nothing will ever help how much agony my body gets in when it's done something, it's suffocating.
"Another good thing to do is losing weight," She suggests and I am ready to punch her. I am not overweight in the slightest. I have put on weight since I became this way but I am still not overweight. If anything, I was underweight before as I was exercising all the time and eating healthily. Weight hasn't caused my current issue and I wish doctors will stop pushing that sort of agenda. Yes, it can be the case but in my personal circumstance it is not because of that.
"Losing weight?" I ask, wanting her to go into further detail. I am not letting myself be walked over by yet another medical professional. I admit that she has given me some more understanding of my illness but it just seems that she is like everyone else I've seen even though she is supposed to specialise in my illness.
"Yes, improving your gut health increases your immunity to stuff," She explains, not mentioning my weight. "I used to be a sufferer but I no longer have it as I lost weight and went on daily walks."
I slump back in my chair slightly and this is where I decide that I will no longer be seeing this woman and I will work at dealing with this illness alone with support from those around me.
I don't want to sound like I am being insensitive but to me this doesn't sound like she had the same condition as me. I know that everyone is different and it is possible to overcome it but how did she manage to go for walks everyday if her body was in too much pain and too fatigued to move? How would losing weight for her work when it doesn't seem like it is anything to do with weight at all?
I have tried pretty much every single step she has told me already and nothing worked. Nothing has helped the way I feel, it is a chronic condition that won't go away just because I decide to meditate for five minutes a day.
"Oh right." Is all I respond with, not wanting to entertain this conversation for any longer.
"I'm going to give you these," She hands me two things that look like dog toys. "These are stress toys and they are for you to help deal with your stress. They might also be useful to squeeze when you are in so much pain you feel like screaming."
I think this is the first good idea I have heard come out of her mouth as when I am in pain I always look for an outlet somewhere else and this is usually by screaming out or crying so much I'm gripping my sheets.
"I think we have covered the basics, this was just a simple appointment so we can get to know each other a bit before we get down to the nitty gritty," She exclaims, looking at her computer now. "We will send you a letter in the post soon regarding when your next appointment will be but before you leave can I ask you a quick question?"
"Yeah?" I reply, unsure of what she would need to ask me.
"Why are you using crutches? Do you have a sports injury?" She asks me and the question slaps me in the face a little.
"Because they help me walk easier." Is all I say, not wanting to explain why I am using walking aids to anyone, not even a healthcare professional.
"Can you show me how you use them?" She asks me another question and I sigh before standing up. I place my booklets back down on my seat and pick my crutches up, putting them under my arms and start to walk supported by them. Yes, there are other walking aids I can use that are probably much more effective than crutches but these are what I am currently comfortable with. When I use them people will assume that I have a sports injury, just like Chloe did, and they won't assume that I have anything wrong with me that won't get better.
I don't want random people in the street knowing I'm disabled just yet. I don't want people to see me and feel sorry for me, I just want them to walk past me, paying me no attention just like they would if they saw me without my walking aids.
"Can I see how you walk without them?" She queries and I look at her bewildered.
"Why?" Is all I ask in return.
"I just want to see." She responds, not answering my question at all really.
"Okay then." I could refuse her question completely because although I have nothing to prove to anyone, I still feel like I have to show people that I am actually sick. I can't help but feel like she is asking me to show her how I really walk because she doesn't believe there is anything actually wrong with me and that my crutches are just this big act so people can feel sorry for me.
I certainly wish that was the fucking case.
I let my crutches drop to the floor along with my dignity and walk just like she wanted me to. I can feel the burn with each slow step that I take, causing my legs to bend even more than they should as I can't bear to put the full pressure of my weight on them. My brain commands my legs to move much quicker than they actually do and so it's like I am dragging them behind me as I walk. I limp everytime I lift a leg up and cry out in pain everytime I place one down.
"I'm not doing it anymore." I announce as I sit on the chair, crinkling up the booklets, and pick up my crutches so that I can get the hell out of here.
"That's fine," She agrees, studying me. "I don't want you to use those crutches anymore."
"Why?" I ask her, genuinely confused as crutches are the only thing that actually help me walk properly at the minute.
"Because you need to learn how to walk without them." She sort of orders me and I stand up, stuffing the booklets into the waistband of my trousers so it looks like I will actually go home and read them.
"I can walk without them." I comment, my voice growing more stern the more pissed off I get.
I am confused as to why she doesn't want me using the crutches in the first place. If she wants me to go on walks everyday so badly then she has to be okay with me needing an aid to be able to do that. I can walk without using these crutches but they make it a damn sight easier to make it happen. If I walked without the crutches to today's appointment then I wouldn't have made it into the front of the reception building as my legs feel like they have been in the freezer overnight and they need defrosting.
If I want to use something so that walking is easier on me and for me then I will fucking do it.
"I'll see you at our next appointment." I announce before she can reply to my previous comment and leave the room slowly as it hurts so much to walk. That's another thing I miss; being able to make a point and leave the room, now I can't do it as it's delayed so it has less of an impact.
I don't care if I am being harsh towards people anymore, it is not my job to make people happy if they don't treat me with any respect at all. I am a firm believer that you should treat people how you would want to be treated, so if they aren't nice to me, what is the point of trying to be nice to them?
If they don't understand what I am going through then that's on them and I won't explain myself to anyone, especially if they don't care.
I find my mum's car in the car park and she studies me silently before driving away, being able to tell that all I want to do is get home and get to bed. I am in so much fucking pain and it's taking everything in me not to scream out about it.
"You weren't in there long." My mum comments further into the drive.
"I know, I don't think I will be seeing her again." I mention and she says something under her breath before replying to me.
"How come, sweet?" She asks me and I explain everything that happened to her and she makes gasp sounds when I do.
"She what?" She gasps when I tell her what Chloe did about the crutches. "She can't fucking do that. It's not in the CFS guidelines to not use crutches. You are not going to see her again. Your dad and I will find you someone else."
"Thank you." I tell her calmly and she grows more furious the more she thinks about it.
We get home, after a long journey of mum being angry about the appointment and how much she wishes that she was in there with me so she could tell Chloe where to stick it. We walk inside and Willem isn't in as he's at college and my dad is nowhere to be seen so he is probably out with all his dad friends. I head straight up to my room without talking to my mum as she knows I'll be going up there anyway.
When I get to my room, I close my door and head towards my mirror to take a look at myself. My eyebags are prominent and my hair looks lke it hasn't been brushed properly as it's been caught in the wind and my outfit looks like it was put together by me pulling the first things out of my drawers, which is the truth. I don't care about how I look anymore, it's not a priority.
I look at my stomach and notice that it's slightly bloated from the stress of today and the fact that I am due on my period. I lift my top up to examine my stomach and I see the surgery scars there and I sigh out loud because this is just another thing to add onto the list of things I should hate about myself.
I really want kids. I really want to be a mother and have a family that I created. I want to be able to grow old with the love of my life and drink coffee as our kids and grandkids come to visit us once a month but I don't think that will be something I ever have. I have already found someone that has proven to me that he will stick by me through everything but if anything bad happens to Corey and I then I doubt I will find anyone like him again, leaving me to be alone.
If Corey and I do end up lasting, I don't think that kids will be on the cards for us. Being a mother has always been my second biggest dream alongside skating but I guess that it's just another thing my body is stripping me of becoming. I feel a tear slip out of my eye and I wipe it away quickly as I don't want to be sad about it for too long and as Chloe said today, I need to start thinking happy thoughts.
Pancakes will make me feel better and I deserve them after the day I have had today.
I take two painkillers and wipe my eyes again so that it doesn't look like I've been crying and go back downstairs to find mum opening a package downstairs. I was going to leave the house without saying a word but I am unfortunately nosey so I decide to say goodbye in an attempt to see what she has ordered. It also gives my painkillers longer to do their job.
"So, what have you bought me?" I joke as I hobble my way into the kitchen with my crutches.
"Some patches," My mum replies and I am shocked that the package is actually for me. "Some vitamin patches and pain patches. I've heard good things about these pain patches, they sell them over the counter in pharmacies."
I take the box of pain patches from my mum and open them, the strong smell of them hitting me as soon as I do. I take a couple out and dot them on my leg, not trying to read the instructions on how many I should put on as I just want a release then and there.
"Are you not going to read the instructions?" My mum asks me and I just shake my head.
I originally felt nothing when I put them on but now I am starting to feel a slight burn where they are placed. I don't take them off as it doesn't feel like it's a reaction burn but it feels like the patches are giving me a feeling to take my mind away from the fact I'm in pain. They don't work fully as I can still feel the pain deeply but they certainly take the edge off.
"Now, sweet, I know that you don't like using these sorts of methods," My mum begins and I start to grow worried. "But I also got you some Fiji water with some electrolyte tablets as apparently they are good ways to cleanse your body too."
"Oh, cool." I respond, not caring that she is trying these techniques because at this point, I am willing to try anything and everything. I know that my mum has joined facebook groups to do with my illness so this must've been something she has seen on there so I won't argue because of that too.
"Why are you still awake anyway?" I'm questioned yet again as I take a bottle of water from the new pack and pour a sachet of electrolytes into it.
"I'm thinking about going to get some pancakes," I admit to my mum and ears perk up at that. "Can you take me?"
"If you're paying." She smiles mischievously at me and I smile back, causing her to go and get her keys.
We get back in the car and my pain killers have kicked in and my pain patches are working wonders so I can hardly feel the pain as much as I could before which eases me and once we get to the diner I am hit with the familiar memories of Archie once again. I give myself a moment to breathe through the grief hitting me and get out of the car with my crutches.
"Don't you dare tell Willem or your father that we came here, they would kill us both if they found out," My mum warns me as we walk up to the door. "Are we eating in or getting a takeout?"
"In. It's easier," I reply, following her in the diner and a man walking out holds the door open for me to let me in with my crutches. "Thank you."
We go in and find a table, not opting for a booth as it is harder to get in and out of one with my crutches and look at the menu. I decide that I want blueberry pancakes with ice cream and my mum decides she wants waffles. She goes up to order and as she is waiting in line a waitress comes over to the table opposite mine and I would recognise that hair anywhere.
It's Maddy.
I haven't seen her since she came to my house so this is a bit of a shock to the system. She looks the same, gorgeous girl she always has been and I wonder how she is doing. I hate her so much for what she did to me and how she has treated me but I can't help but hope she is okay as it must be mentally hard for her to be here everyday for work. I wonder if she thinks of Archie, Jasper, or us. or any of those memories when she walks through these doors like I do, or is she just completely fine like I sort of hope she is.
Maddy must notice someone staring at her so she looks up from cleaning the table and sees me. She looks shocked to see me here as she knows I never wanted to come here again after Archie passed. We look at each other for a few moments and neither of us speak, we just stare in shock. I am waiting for her to say something, to say anything because if she does speak to me then I know that I must mean something to her and if she doesn't then I know my place.
She drops a fork on the floor and it makes her jump, she scrambles to pick it up and looks at me once more before walking off. I sigh to myself in relief and I don't know why I am so relieved she didn't speak to me, I think it's because this interaction has given me some sort of closure with her. If she spoke to me, I would have had to speak back and that would have probably turned into me forgiving her, which was the last thing I ever wanted to do but I always see the good in people.
I flatten my hair with my hands and make my way up to the counter to meet my mum as she orders out food. "Would you like to eat in or takeaway?"
"Can we take it away please?" I answer for my mum, changing my mind about wanting to stay as I don't want to deal with seeing Maddy here just yet. It is hard enough to be reminded about Archie, I can't be reminded about what Maddy and Jasper did to me as well.
"Of course." The waitress replies and I head outside and wait in the car whilst I wait for mum to bring the food out to us.