Frustrating Appointments

I had another hospital appointment last week.

It was just to get the results of a test, but it was frustrating for a number of reasons. The consultant who saw me was not my normal one, and he just barely glanced over my notes before dismissing me as ‘deconditioned’. He told me to go and exercise and I would get better.

I am so fed up of that line.

I’ve been told I am deconditioned for years. I am constantly told to go and exercise, or do yoga, or get my fitness better, and then all my issues will go away. The problem is, I do exercise as much as I possibly can. I have been working to increase my fitness for years. Trouble is, it’s difficult to exercise when five minutes of walking can leave me breathless and in pain. Never mind that I can’t climb a flight of stairs without ending up doubled over and wheezing.

I used to have good fitness. I was a woodwind musician at a top music college – my breathing was much better than most people my age/height/weight. But something happened close to 3 years ago that affected my breathing so badly that I can’t play my instrument anymore. Since then, things have just detiorated until now I’m stuck struggling with walking or climbing stairs or even standing up, some days.

It is endlessly frustrating to have doctors tell you, ‘Just go and get fit!’, without actually reading over your notes.

If the consultant from last week had read my notes, he would have seen a number of slightly abnormal results that have kept my main doctors concerned about me. He would have seen that, while my heart is structurally sound, it consistently works too hard, and not just because of nerves. He would have seen that my anabolic threshold is much lower than it should be for my age/height/weight. He would have seen that I get breathless much faster than I should, and that I have lost a lot of weight over the last few years for no adequately explained reason.

But no, he just saw the lack of fitness and instantly told me to exercise.

It undermines me and my struggle to get told this so much. It undermines me when I have to ask for help when something is too heavy or awkward for me to lift, or when I have to send my brothers upstairs to fetch me things because I can’t go up there myself. It makes me feel weak, and pathetic, because I should be able to fix myself through exercise when I can’t. I have tried so hard and it isn’t working. If anything, exercising more makes me feel so much worse and makes my general health worse, until it is all I can do to drag myself out of bed.

I am tired of being dismissed and ignored when all I want is to get better.

I am not blaming the consultant, however. It isn’t his fault he didn’t have the time to read my notes properly, or that he hasn’t followed my case in every intricate detail, or that my case is a complicated one. I understand that. But, he very nearly stopped all my investigations in its tracks, and I had to remind him that my usual consultant wanted to refer me onto other doctors and order other tests. So, he is getting a second opinion, and then he is going to do that.

This process is extremely frustrating. I keep trying to stay positive, but the entire last 3 years of my life have been full of appointments like these. And if they aren’t like these, then they involve doctors saying, “Well, I don’t think you have this, but we’re going to test you for it to make sure.” Then the test takes a couple of months, then the results take a couple of months, they come back negative, and the doctor says, “Yes, I didn’t think you had that, so you’re fine! Oh, but there might be one other thing you have, so we should check that too, though you most likely don’t have it.”

And on and on, in circles, until I’m even more confused than I was in the first place and still feeling sick and weak and in pain every day.

I just cannot believe that it is normal for my body and fitness to have taken such a sudden downturn 3 years ago, and for there to be no physical explanation for that. I was at the height of fitness, and now I can’t even climb the stairs in my house. Surely there has to be an explanation for that. Surely there is something wrong.

I know my GP agrees, as does my normal consultant. They will keep investigating.

I just hope the road isn’t too much longer, and I won’t have many more appointments like this to contend with before it is done.

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Battling the Negative Thoughts

As I sit in my parents’ house again, away from uni and away from my independence, I find it a lot harder to keep the negative thoughts away.

I say ‘independence’ – it’s hardly that when I can’t cook for myself, walk very far, or climb a flight of stairs without crawling or doubling over. But it was somehow easier to manage my illness when I was living away from home – I guess because I had more control over what I could and couldn’t do, and because there was more variety in the people around me and the different activities available. If I had a bad day, there were still new people to talk to. At home, it’s just my family, and I feel like I’m burdening them if I talk about my bad days when I know all they want is for me to be well. Also, there are a lot of reminders in my house of my past as a classical musician – the days when I could play my oboe. I was studying at music college when I first got this illness, but now my breathing is too bad for me to play. I can’t play my oboe anymore because of this illness. It took away my career, my student life, my ability to have a voice and feel good about myself. Losing my music still hits me hard and I really struggle with it daily. Being at home brings it into sharper focus – my parents will listen to classical music, or I’ll walk past the instruments I used to be able to play, and I will feel useless and weak that I can’t do that anymore.

So even though I’m home and with my family’s support, I find myself sinking into negativity much more easily. Partly because this is the house I grew up in for the first healthy 19 years of my life, before I had this sickness and before I needed help. Now, it’s easy to forget how much I struggle with simple everyday tasks. It still feels strange to be asking my family for help for tasks that I used to help them with. I don’t enjoy it, which means I’ll often forgo things because I don’t want to ask for help or be a burden to them. This forgoing things leads to more negativity, because I feel weak and useless for not being able to take proper care of myself.

One of the few things I can still do is write. I’ve been getting an awful lot written these past few days (30,000 words in 3 days), and I’m proud of that. But I still find myself sinking into negativity. Being unable to be physically active, or struggling with pain every day (and it’s worse at the moment because it’s so humid here), just makes me tired and sick and that again leads to negativity. I end up feeling useless, like a burden to those I love, and a constant complaining mess.

I have a hospital appointment on Friday for some more test results, and the worry about that probably isn’t helping, either. Plus, I have to travel across the country for it. I was going to get the train, but I’m too sick to carry a suitcase, so my dad is going to drive me instead. He’s complaining about having to take time off work to take me there, and I feel even worse because I know that he’s missing out on work and deadlines and pay to help me, and it isn’t fair. I feel like it’s my fault, even though it’s my illness’ fault really.

That’s the horrible thing about being undiagnosed. I don’t have an illness, offically – there’s nothing wrong with me on paper aside from a few slightly odd test results. Most things come back fine, though I still struggle to breathe and eat every day. It makes me feel like a charlatan, and feeds the idea that I am weak.

This endless negativity is not good for me; I know it isn’t, which is why I try to battle it. I do small, productive tasks that make me feel good about myself, and prove that I’m not totally useless even if I can’t get out of bed or get up a flight of stairs, or whatever it may be. I make a bracelet; I do some writing; I meet another goal. I chat with friends online or I get some bills sorted out for my student house next year. All productive things, things that show I can still be productive even with this illness.

But then, there are the days when I can’t do anything. The days when I’m little more than a pained mess curled up in a corner of the couch. What do I do to battle the negativity then? I don’t have an answer.

But I know I will keep fighting, for however long this illness has me in its grip.

…What a Community!

So I just have to say…

After coming back to this blog after several months off, I wrote my last blog post without really expecting anything (other than feeling a bit better myself for having achieved something) – but instead I find a couple of other blogs liking it, and following me. I do some investigation into them, and then I delve a little deeper, and I find a whole HOST of other blogs out there involving people with undiagnosed, chronic, invisible illnesses.

There are others! Can it be true? I am not the only person suffering with horrible unexplained symptoms every day?!

When I first made this blog, it was because I noticed a severe lack of support networks for someone suffering with an undiagnosed illness. I needed somewhere to rant, just for myself. I don’t remember finding other similar blogs, and I felt as if I was suffering alone, completely cut off from the medical world and also from the world of patients who have illnesses they know about and understand. I don’t understand my illness. Symptoms appear randomly, some go away randomly only to return again, some get worse or better without any explanation or pattern. The doctors can’t explain them or provide any support for me, though they are continuing to try, and my family and friends don’t really understand, though they try to be supportive. I felt totally alone.

I almost cried when I logged in this morning and found other blogs like mine, with other people who’s stories are similar to mine. Other people who don’t fit into a diagnosis, but are sick and suffering like me. It’s horrible, it’s sad, and I’m sorry for everyone going through it, but it made me feel a little bit less alone – something for which I am extraordinarily grateful.

Thank you to everyone posting about undiagnosed and invisible illnesses. Thank you so much.

I survived!

It’s been a while since I blogged – mostly because university keeps me very, very busy! But guess what, I have some good news:

I survived my first year at university.

I did it! I survived! I SURVIVED! I managed to last an entire year at university, and even came out of it with some fairly decent grades. This is a huge milestone for me; it proves that I can still be productive, and I can still work hard, and I can still achieve great things, despite living with this difficult illness. I can do it.

Of course, this year hasn’t been without its difficulties. I did end up missing a lot more class time than I would have liked due to my health – I missed five weeks in February. Pain and breathlessness and fatigue kept me in bed more often than I would have liked, but I still completed all my work, and I completed it on time. I never had to ask for an extension or special circumstances. I’m really quite proud of that. I did have issues with my exams, because they were in a building quite a long walk from my college room and I had to walk it a few times, meaning that I didn’t do as well in some of them as I would have liked. But, I still passed them, and I have finished my first year.

I have finished my first year.

This is despite several difficulties around getting the support I should have. My university was brilliant at doing what it could, and I got exam concessions and library support, but in order to get national funding I need a diagnosis. Without a diagnosis (as the doctors still don’t know what my condition is), I can’t access help like a support assisstant to help carry my bags up the stairs, or enough time between classes for me to walk around, or ground floor rooms for the buildings that don’t have lifts, or taxis to get me between places too far or steep for me to walk. This played a big role in why I missed so many classes this year, so I emailed the funding body and they finally agreed to give me a face-to-face assessment. More good news – I had that last week, and it’s being recommended that I get all this support that I should have had this time last year. Better late than never, though, and I’m hoping that with this help I’ll be able to reach my full potential next year without constantly having to miss classwork.

On the medical side of things – I have a new consultant, a cardiologist this time. She’s very helpful, and I had a test done to check the last thing that could potentially be wrong with my heart. If it isn’t that, then she’s going to refer me to metabolic specialists (whatever that means). I’ve got my next appointment with her in a month, and safe to say I’m rather nervous about it. I should be used to waiting on doctors appointments by now – it’s been close to three years, after all – but I still hate this long-drawn-out wait. I’ll be happy when it’s over, but then it’ll be just another impatient wait for the next stage.

Despite everything, though, I have finished my first year at uni! I never thought I would get to this stage in my life, and I am so happy that I’ve managed it. Having support from some great friends has really helped, and I wouldn’t be here without their help. I am truly blessed. Even if I am ill, I’m going to carry on doing my best, and I will continue to survive and (hopefully) succeed at university.

I hate waiting for doctors’ appointments

I’m deciding that the waiting is the worst part.

It’s like hanging on the edge of a pivotal moment that could very well change my whole life. Whatever the doctors have to say, it’s likely to have quite a large impact on my near future, and possibly long-term as well – either they have reached a diagnosis, or at least have taken a very large step in that direction, or they haven’t, in which case I’ll be left in this stasis of not knowing why I’m ill for a little longer. Or at least until the next batch of tests.

Neither one of those outcomes seems very appealing. If they still haven’t reached a diagnosis, then nothing will change, and I’ll keep struggling with symptoms every day without knowing what causes them and without any treatment. This is not easy when I’m trying to get through a degree at uni, as well as keeping up some sort of social interaction as well. I’ve already missed three days of classes this term. Plus, not knowing what’s wrong with me can really make me feel like a charlatan – people ask what my condition is, or why I’m sick, and I have no answer for them other than “Uh, well, the doctors are still trying to figure that out.” How am I supposed to manage symptoms that I cannot explain?

However, the other option isn’t really very desireable either. Sure, having a diagnosis would be great in that it takes away the uncertainty about my future, and it might even allow for some proper treatment and/or management strategies. But, it would also mean that I am actually ill. I know that probably sounds blindingly obvious – after all, I am dealing with symptoms every day – but whilst it isn’t confirmed by any named condition, I still (stupidly) hold out hope that maybe it will all just go away on its own. It hasn’t yet, after two years, but you never know, maybe it will just stop one day and my life can go back to normal!

I guess I am struggling with fully accepting that actually, this is my normal life now. A large part of me is still hoping to reverse the last two years and flip my health situation back to how it was two years ago, when I felt vaguely human and didn’t have to struggle with every step. But it’s looking likely that that just isn’t going to happen. I have an appointment pending with new specialists – specifically the metabolic services – and I am scared of what they’re going to tell me. But, the more rational side of me states, surely it is better to know what’s going on, than to keep on living in the dark?

Or maybe ignorance really is bliss, and these are the last few days when I will quite happily not know what is wrong with me.

I don’t know. Being undiagnosed sucks, yes, but perhaps having a bad diagnosis sucks more.

Struggles

Today has been tough.

Coming to university has been amazing. It has been eye-opening, life-changing, and everything I hoped it would be (and more). But, it has also made it extremely obvious that I am not well. Surprisingly, I’m not finding the social situations too difficult; something I was worried about, as I don’t drink alcohol and I’m not one for large crowds. But, so far, the people I have met have been unfailingly nice and just genuinely pleasant people to spend time with. I enjoy their company. The only problem is that my health issues mean I constantly have to say ‘no’ to things.

“Do you want to go out tonight?”

“No, I can’t, sorry.”

“Aw, why not?”

“…”

And then I’m left with the ever difficult situation of wondering exactly how much to tell them. I could just chicken out and say I’m too tired, or I have an early start, or I have work to do, or whatever. But that does involve lying, which I’m not really a fan of if I can help it. The alternative is I tell them I have medical issues, or I’m struggling with my health. The problem with that is that every conversation I have ends up being about my health problems, and I’m worried that I bore everyone I talk to, or I just end up repeating myself over and over.

Of course, on days like today, I don’t really have to tell people. It’s pretty obvious just from looking at me. I was wheezing and gasping for breath, and walking doubled over in pain, which made getting to and from lectures difficult. Now I am exhausted and I just want to curl up in bed, but this evening I had to go out to a fancy dinner, so I dragged myself there in something like a human state.

Now, I’m finally home again, and I just want to crash and sleep for an age. But I can’t, because I have work to do and reading to do and lectures tomorrow and I’m just … questioning if I will survive here. I hope I will. I want to, goodness, how desperately I want to.

Some Things that Just Bite

I recently started at university. This was a huge step for me, as suffering with an undiagnosed chronic illness makes things tougher for me than for most, but I had heard that support was available, as it should be for all disabled students. But guess what? You need a diagnosis to get the support.

Yes. I can’t get any funding to help with my illness without a confirmed, named condition.

What’s wrong with that, I wonder? Surely it’s reasonable – after all, we wouldn’t want people who have nothing wrong with them getting help they don’t need.The resources would be better spent on people who have known, troublesome health issues and require particular support to give them a normal university experience.

The problem, I say, is that there really is something wrong with me. I get so breathless that it is a real struggle for me to move between my classes. I also suffer from fatigue and nausea, along with chest pain and discomfort, which make it really difficult for me to focus when I am having to do lots of walking to get to and from lecture rooms.

Now, if I was eligible for funding, I would be able to get taxis to and from classes. That would essentially remove the problem for me – I could turn up ready to work, not panting and gasping for breath for the first half hour of class. But because I don’t have a named condition, I am not eligible.

I see a few problems with this. One, if I did have a named condition, I would probably not need as much support. I would have a treatment plan, I would understand what things made my illness worse, and I would have methods and possibly medication to help me cope. As it is, I have a series of confusing symptoms but no way of dealing with them other than waiting for them to go away.

Secondly, I provided pretty strong medical evidence from my GP and my consultant, explaining that I have been undergoing tests for 2 years (and am still undergoing them), but, through no fault of my own, no cause has yet been found. My doctors clearly outlined my symptoms and their recommendations of the sort of support I should be receiving that would help me use my time at university in the best possible way. But apparently, it wasn’t enough. Unless they can put a name to my condition/illness/whatever it is, then I am not eligible for support.

I have real difficulties with that. It makes me feel like my struggles are somehow not worthy of help. I am dealing with difficult symptoms as best I can, usually with a smile on my face, and the people that meet me usually are extremely supportive. My classmates have been very understanding, and the staff are reasonable and understanding as it is pretty obvious I am struggling to catch my breath (I can’t usually speak in full sentences).

So I wonder why I am not eligible for support. It does strike me as odd that the only time I will be able to get any funding is when (if ever) I finally have a diagnosis, as that will quite possibly be the time when I won’t actually need help anymore, if it turns out to be treatable. Funny the way things work, isn’t it?