Combined fear and excitment

I feel like this is something everyone has probably experienced in there life. With relation to one aspect of it or another. It’s probably something people with chronic illness feel quite a lot, when trying new treatments. As I am only new to trying actual treatment. Not new to being ill. These emotions, the combination of over such things is very new to me.

So background to the current situation for those who don’t know. I was put on Rigevidon, a combined oral contraception to help with what might be endometriosis. Specifically the pain associated with it. The pain which I learnt last month is more severe than I thought. And current opinions of oral contraception so far are mixed. The 2nd week I was on it I was very crampy and getting endo pain in the one week of the month I don’t normally get pain. I’ve been very nauseous, had headaches and my skin hates it, could go on with the side effects.  But Obviously I had no ovulation pain (had a few little ovulation type pain stabs but nothing like the last few months) and I don’t seem to be getting much pre period pain yet so it’s obviously doing something good considering I only have 3 days left of the 21 days. I am very scared of the effect it will have on my period though. Will it have any? Yes it’s meant to help with the pain. Or does in some cases but will it in mine? And how much so? Enough for it to be worth it if the side effects wear off.

Because if the side effects do wear off and it does significantly help with the period pain then it could be my answer. I would never have to know if I do have endo or not. Which would mean I would never have to know if I can’t have kids until I try. And I would never have to deal with idiotic incompetent doctors trying to get a diagnosis who are more interested in telling you your stressed, or it’s not that bad because you don’t vomit thank actually taking you seriously and carrying out tests to rule things out or find out what is actually been going on with my body these last 8-9 years.

That’s why I’m excited. Because the idea of finding something that works is a wonderful one. The idea of feeling like a somewhat normal human being again is a wonderful one. I couldn’t want anything more. However much I don’t hate having a chronic illness because it’s made me who I am. The option to feel normal again is something I’d take up in a heartbeat. But I’m also scared because what if it doesn’t help or the side effects don’t ease off and I’m back to square one and having to face trips to the medical centre moaning about pelvic pain, abdominal pain, bladder and bowel issues, bloating, nausea (To summarise my symptoms) all over again.

And of course I know it’s not the magic solution to make me feel perfect again but that’s okay. As long as I feel okay enough. And if this does that. That will be wonderful and if not then more anxiety over doctors and tests and future.

Gaining Perspective, learning to go easy on myself while I can.

Hello, so frequent readers of my blog will know that I have recently been going through a lot of feelings of guilt, weakness and denial. But recently I feel I have found some perspective or atleast I am starting to get over those feelings for the time being.

I guess it comes from the perspective of others, and those others not being my parents. Whom are like they are and pushy like they are about certain things, one being me having a part time job and working that job regularly because they worry. And because they don’t understand. They don’t understand that I am chronically ill. Heck I don’t think they even know. I know I’ve never told them. And not only that- they don’t realise how full on being a law student is. Especially if a) you want a good degree classification and b) you’re not super intelligent. Yeah, life was all fun and games in first term. I did manage to study adequately and for the last couple of weeks of term, commit to rehearsals,  work a couple of shifts and socialise a lot. Yeah, I did push my body too far. I was so ill and my chronic illness was so bad, even for weeks after term ended but I did manage to do it all.

But now I’ve realised, and this is because I’ve realised if I do work, I need a new job. And all Other jobs will provide regular commitment of hours that it’s just not going to be practicable.Not for my health and not for my grades. More not for my grades to be honest. Because I am going to have to start revising for exams now, start making proper notes and taking things more seriously. Which takes up time, it means I do have to do some studying over the weekend, when before I had weekends free to netflix and chill or go on autumnal walks.

And for a while I beat myself up over that, beat myself up for taking the easy way out. But the reality of it is – as long as I stick to some sort of budget I don’t need the extra money this year. So why would I add the stress and strain of regular working hours on top of uni, drama (the love of my life) being chronically ill and maintaining a social life. I might look out for when uni are next recruiting student ambassadors so that way I can still have some income but until then. I will quite happily not work regularly and try not to feel shame for that.

Fact of the matter is I am a productive uni student, not the most productive but I am productive and I do try hard and work hard. So why should I feel guilty about not doing enough? When I do do enough.

That Little Thing Called Denial

Hello and welcome, readers of my blog.

Today I’m writing about that thing called denial. And how that thing called denial has come back into my life. With a vengence, if I may suggest. Just because I’ve learnt to control some of my symptoms and minimise them. As if the fact that the nausea,  diarrhoea and bloating have lessened somehow means I’m not chronically ill at all. Because the pain isn’t as constant as last month. There’s nothing wrong.

And of course that’s ridiculous. I know it is. Its not normal to be in the amount of pain I find myself in on an all too frequent basis. It’s not normal to not be able to eat before 9:30am at the earliest without risking feeling horrifically nauseous or possible diarrhoea. It’s not normal to bloat like I do. And urinating should not be painful atall, especially not to the extent it was this morning. Neither should having a bowel movement cause pain. Even down to being as fatigued as I am, and having the irregular periods I still have, despite having menstruated for over 8 years now.

So why so I do it? Why do I find myself denying that there is something wrong with me. Maybe it has something to do with how this has been my life for over 8 years now. To me this is normal. And yes certain things may or may not have got worse in that time, but I’ve got used to pain. I’ve got used to nausea, fatigue, bloating. The works. So for me that is normal. Which leads me to feel like I am now just moaning about nothing…

Or maybe because the condition I think I most probably have is endometriosis and maybe the fact that initially symptoms only presented themselves at a certain time of the month makes me again feel this is normal. This is just womans troubles which I cannot deal with… especially considering I’ve always had friends who have had cramps and nausea.

An alternate reason because there are a lot of people with chronic illness who are a lot more ill than me, and my brain seems to focus on that, rather than all the people who may have chronic illnesses and not be as ill as me.

Or maybe it’s a combination. And my brain. Being the mess it is seems to focus on why I may not be ill than all the many reasons as to why I certainly am ill and why I certainly need to fix it.

It’s one of those things I’ve got a lot better at ignoring and recognising when I’m doing it but it’s still hard not to feel that way atall.

 

 

Dealing with guilt, feeling over privilaged.

Hello guys.

So lately that nasty little thing called comparison with others has started to creep in again, something major. And it’s creeped in, in many ways. One of those ways is in making me feel like I haven’t done enough with my life in the past. Haven’t been doing enough with my life over the Christmas break from uni.

And I’m not talking about not doing enough with my life in terms of creating new experiences but not doing enough in terms of not having a job and not earning money and never having had a job until 2 months ago. Even with a job now, the hours are so awkward and the location is so awkward in relation to where I live during term time that I struggle to find appropriate shifts that fit in with other commitments and mean I can get back without risking being murdered.

And all of this has lead to be feeling incredibly bad. People my age work crazy hours, somehow balance that with socialising and studying. I’ve worked two shifts in my life. And they were great experiences. One was fun, the other I cried but after that it got better. I just feel like I should be doing more. Yet at the end of the day I know my body can’t take more.

I pushed myself to the limit last term. I ended up getting 3 run of the mill illnesses in a week, the last week of term and so overly exhausted that my energy is only just back to a normal level of fatigue. Not to mention that I am chronically ill and on a bad day I find it nearly impossible to go to lectures and seminars and study from bed. I drag myself in, in comfy clothes and sit at the front near the door in case I need to leave to vomit or I get a bout of diarrhoea or I really urgently need to pee. I am silent and barley engaging my brain in seminars on days I am having a bad day, because I physically cannot. Let alone standing for 4+ hours at work. On a bad day, that is not going to happen. Yet if I had to cancel a shift because of that I would feel so bad, I would feel I had to push through it because that’s what people do. Because that’s what my parents do when they’re sick.

Then there’s the guilt of not having worked since I was 16. Yes I had a paper round until that point so it’s not that I’ve never worked as such… but I do feel like I’m overly privileged. In the sense that I don;t make my own money, but I have student finance and savings and occasionally my parents and other family members may help me out. So I live fairly comfortably without having to try. Without having to make my own living… and I feel bad about that… even though obviously there are reasons why I can’t 100% make a living.

First and foremost it’s that I’m a law student. Being a law student takes a lot of time, a lot of study, a lot of reading. And for any student, balancing a full time job and passing well would likely be near impossible. Secondly I have a chronic illness. I may not be diagnosed but there is something wrong with me. That means I fatigue easily, I have sometimes severe pain, I have nausea, bloating, diarrhoea, frequent and intense urges to urinate. Upon other symptoms. Obviously that limits me to some extent, fortunately not anywhere near as much to others who are chronically ill. And there were reasons why I didn’t work before hand, number one being it did not seem to matter however many jobs I applied for no one wanted me. I barley got any interviews. Secondly I was such a mess back then, mentally and also physically (I would say I was more physically ill then than I am now, in terms of how severe the symptoms were. They just weren’t as frequent.) I wouldn’t have lasted had a got a job. I was an anxious mess and then I was a depressed mess and then I had a flair up and my health really deteriorated and I relapsed into my eating disorder and decided I had to work on myself. At least until the ED related physical ill health was gone. And then exams came around and then no one wanted me for a summer job. So it’s not like I haven’t tried and not like had I not tried that I had no excuse. There were reasons.

But I still feel so bad about it, especially on days like the last few days where I’ve felt fairly healthy. Not totally healthy. But about the healthiest it gets for me right now and I feel like I could do everything, be some sort of superwoman and do it all… and then feel bad for not.

Does anyone else feel the same or has felt the same in the past? Or is it just me? With multiple mental illnesses that have still to be completely overcome along with an  chronic illness, not officially diagnosed, that makes this wonderful thing called life a very complex and confusing journey to say the least.

Insomnia, sleep, sleep as a spoonie

Sleep issues are something I’ve suffered with for years. More predominantly since I was around college age and stress got to me which added an extra layer to my sleep issues. When before it was just chronic pain and nausea affecting me.

I know sleep issues are something many adults suffer with, many adults moan about. Say “they haven’t been sleeping.” or “There’s not enough time.” or “They couldn’t get to sleep.” It is somewhat an epidemic. Quite possibly due to modern society. Modern technology and the expectation in some career paths to be 100% totally dedicated to your work and nothing else.

But sleep is essential for everything. And something that should be prioritised whenever possible. It can be frustrating when we can’t get to sleep and only have a maximum number of hours we could possibly get anyway. Especially for us spoonie’s who often suffer from fatigue regardless of getting enough sleep, yet also have the issue of not being able to sleep due to symptoms of our illnesses. It’s quite a difficult situation to be in.

I’m someone who has tried everything and found that although it doesn’t always work a must for me is to have some sort of sleep music or hypnosis to send me off. If not the slightest noise will disrupt and disturb me. And there can be a lot of noise at uni residences.

I’ve also found atleast a basic routine helps, trying to go to sleep not too early or not too late and if I end up being up a lot with a pain flair trying to get my sleep pattern back as soon as possible in order to catch up again is most sensible to reduce the effects of sleep deprivation which generally make me feel like I’ve been hit by a truck, or with some awful flu. Even if it’s 5-6 hours rather than 7-9.

I guess most non spoonies wouldn’t understand that. They may feel 5-6 hours is acceptable sleep, although not enough for optimal human health they can manage on that. Yet us spoonies have out bodies fighting against us anyway and often struggle to one extend or another with energy, especially if we try to live busy normal lives despite out illness so we need a minimum of enough sleep to manage well.

Living in a World of Fear and Confusion

I guess the title of this blog sums up what it’s like to have an undiagnosed illness, especially one that is chronic in nature. One whereby one day you get sick and  then you never get better. Bonus points for having an illness that hits when your young and lost and there are many other things also going in in your life and bam. It’s a recipe for depression to be totally honest.

I had very much managed to put the fact that I was ill to the back of my mind for a while, it was very much just  “I’m hurting because I’m about to get my period.” or “I’m nauseous because I’m about to get my period.” However much when my symptoms first started I knew something was wrong I guess I had managed to kid myself that nothing was and I was able to be happy and not live in the world of fear and confusion. The world that I spent a good few years of my life in.

And even now when part of me very well knows something is wrong I can be happy despite the fear, and the confusion. I can be happy by being busy, by being distracted. My hanging out with friends and family. Or just my appreciating the little and simple things in life, such as the sun setting or the weather.

That fear and confusion does still get to me though. It gets to me when my mind isn’t occupied or when the pain cannot be ignored even with use of pain meds. On the nights I lie awake in pain, or the days of never ending nausea or seemingly permanent bloat. When my friends start talking about when they want to have kids and how many and names and you realise you might not even be capable.  When other people online moan about their pain and it seems way worse than yours and you end up comparing yourself. Questioning whether how you feel is just normal and your just weak. Because you can’t possibly have endometrosis, PCOS or any other condition because the pain isn’t that bad. The nausea isn’t that bad. The bloating isn’t that bad. And overidingly because you do have good days, Days where you actually feel like an energetic, healthy, functioning member of society.

Lots of concerns and lots of questions come into my mind on these times. When I was younger it was a lot of “What if I’m dying?” “What if I have cancer?” What the hell is wrong with me?” Now it’s a lot of “What if I can’t have a kid?” “What if there is nothing wrong with me?” What if it turns out that I’m just weak?” “Why can I not just deal with this already?” “What if it impacts my career aspirations, my chances of being a well functioning member of society?” “What if I end up on benefits and looked down upon?” “What if everyone hate me because I moan and I’m ill and that’s all there is to me?”

It’s that sort of thing that really gets me down. The fear that there is nothing wrong, that everyone will hate me, that I won’t be successful in life, that I won’t have kids. Along with the confusion over what is wrong. Is there anything atall. And yes I have been to a doctor since I last wrote about being chronically ill. But I had no medical tests. I was prescribed pain meds ever so slightly stronger than ibuprofen and told to see how that goes.

Fact of the matter is that they barley work. And seeing as I’m going to have to pay for my next prescription there’s no point taking it. They are not worth £8.40 or however much a prescription costs these days.

And then there’s the knowing that I need to go back once term starts again but the fear kicks in again. Students can’t book appointments so there’s the going down to walk in having to possibly see a different doctor, explain the scenario again. And then there’s the fact that this doctor may not believe it’s endo. At least the one I initially saw did. And preceded to look at me as if I had cancer. And they may just say it’s IBS or in my head. There’s the knowing I need to be pushy. Ask for referals and ultrasounds but not knowing how to. Being scared to….

And it leaves me pretty stuck to be frankly honest. Being chronically ill is hard but there is a life outside it. There is happiness outside it but sometimes the illness gets me down.

 

 

I struggle to socialise because of my chronic illness?

Hello, It’s me, blogging again. Today I am blogging about socialising and how I struggle with it and making friends mostly due to my chronic illness and in part related to my mental illnesses.

So I have been chronically ill since I was 11. Which in short made me feel ill a lot of the time and made my friends back then get fed up because of me feeling ill all the time. I’m not going to go into all the details in this post as you can read about that in one of my previous blog posts.

This has lead to me A) Not knowing how to socialise and B) Struggling to make friends.

Lets address A first. The not knowing how to socialise. Being chronically ill for 8 years has meant I don’t know what to talk about in social situations. I genuinly have no idea how to start a conversation. I can normally manage to contribute when a conversation has been started to some extent but I do really struggle with not knowing what to say because I essentially missed out a lot with regards to social experiences from having friends who got sick of me being sick. And also because when something consumes your life for so long sometimes it is all you can think to talk about. I did notice that when I was recovering from anorexia the first time.

And then theres B the struggling to make friends as again it can be hard to figure out what to say to new people and also because it can be hard for people to get to know you when you’ve been chronically ill for 8 years. Purley because there is not much to know about you. Everyone else seems to have been on amazing adventures up until this point in life and I havn’t. I’ve binged watched criminal minds, grey’s anatomy, scandal, higher ground, brothers and sisters, alley mcbeal and various other shows. I’ve studied. But for the most part that really is it. Because I was too ill to want to do anything else a lot of the time. Hobbies I found enjoyable before stopped being enjoyable because they hurt me.

And then theres the issue that combines both of these. The way in which the chronic illness impacts on you day to day. Yesterday my friend thought I was getting bored of her or something and in reality I was in some moderate pain and I just didn’t want to stand up. But I couldn’t explain that to her. How would that work: “No I’m not bored of you but I’m starting to get period like cramps when I’m not on my period because my body a mess.” And then theres the fact that sometimes you just don’t want to hang out or you do want to go home early because of the pain. Or the fact that you can’t commit incase your having a bad day. It just causes so many problems.  The reality is I don’t feel comfortable telling them I am chronically ill right now for a number of reasons. One being because my symptoms arn’t that bad, not as bad as they were in terms of pain severity and not as bad as so many others experience. The second being the fact that I’m not officially diagnosed with anything and I think they’d thing I’m making it up for attention or being stupid because I have yet to see someone about my symptoms. I guess that’s one of the many ways in which my anxiety interefers with me. The third and final reason is because I’m scared I’ll lose them or they won’t want to live with me next year because of it… and I’d be back to square one of being a hermit again.

So yes that is that. I guess it is just something I will have to learn to navigate.