How Are You?

How Are You?

Sorry it has taken so long for me to get around to this. Doing anything is difficult when you’re depressed. But more on that later.

For now, I’m going to give you a general update on my health. The itching went away by itself, about 3 weeks after my last post. I was taking 2 antihistamines a day but I don’t know how much of an effect they actually had since I started taking them before I went to see the doctor. Does it usually take 4-5 weeks for antihistamines to work?

But I’m explaining things out of order. The blood tests that I mentioned in my last post, all came back normal (as is always the way), so I know it wasn’t cancer, or thyroid issues, or MS, or any of the other things that I was worried about. What it did mean, was that the doctor didn’t know what was going on (as is always the way). She did, however, ask about my M.E.

I think that since “long Covid” has become a thing, doctors have suddenly become more familiar with M.E (also known as post viral fatigue) because it shares so many symptoms and similarities (ikr, who’d’ve thought🙃). The doctor asked me when I’d been diagnosed, and I told her that I hadn’t officially yet. So, she said that she would put in a referral for me. She told me that it would need her to fill out an evaluation form, and that I’d also need to have another set of bloods done and a urine test. She called me the next day to ask me some questions about how my illness effects my day to day life. But at the time I was having kind of a brain foggy day and, since I’ve been living with this condition for so long, I’ve learned to adapt to my limitations. I find it difficult to determine how much the illness impacts my life since my measurement of “normal” has shifted so much, so I basically ended up telling her that I’m actually doing quite well and live a relatively normal life. It was only when I was talking to my fiancé afterwards about it, that I realised it still impacts my life every day because I have to make adaptations to live. If I were healthy, I wouldn’t need to make all of these allowances in order to just go about my day to day business. I intended to tell her all of this when I called her back for the blood and urine results, but unfortunately I haven’t been well enough to go ahead with any of that.

The 4-5 weeks worth of itching really took it out with me, and then there was an incident just before Christmas where a muscle spasm landed me in A&E. I’ve been weak ever since and the holidays in general are always a stressful occasion for me. So basically, I’ve been in a flare for about two months, with the odd ‘okay’ day.

Now (as mentioned at the start) my mental health is really starting to be affected. Not just because of my physical illnesses, the pain, fatigue and insomnia that comes with all of that, but also because of the state of the world as it currently is. I’ll go into that in more detail another time though, it deserves its own post.

I am also currently at my highest ever weight. Even back when I was almost completely bedbound, I never got up to this weight. Part of that is because, back then, I had to look after myself, so if I couldn’t get out of bed, I couldn’t eat very much. But now I have a fiancé who cooks all my meals for me, so that means that I’m still eating loads of calories but not burning them off, so my weight keeps rising. I have just bought myself a treadmill, which is something that I have wanted for as long as I can remember, and I’m planning to start walking, a little bit at a time, to build up some strength and stamina, without having to go outside.

I can’t think of anything else to tell you at this point. Basically, everything is crap.

You Don’t Have to do Anything

You Don’t Have to do Anything

In this Covid-19 pandemic that we are all currently living in, there seems to have arisen a new social pressure to be productive and achieve. There’s a lot of emphasis of what new skills you will have acquired once the lockdown is lifted. What renovations you will have made to your life and your home. I have seen and heard many people say something similar to “You finally have the time to do all of those things you always said you never had the time for”, and while this may be essentially true, there is no reason why you should now be obligated to do those things.

The thing that these people are overlooking, is that this situation is unprecedented for most of us, and that what we are actually living through a massive shared trauma. For these people, their go-to coping mechanism is to keep busy so that they don’t have to sit with, and acknowledge their feelings about what is going on around them. These people will likely find that eventually they will run out of things to keep themselves busy, or that their thoughts will overpower their actions so that their ‘keeping busy’ tasks are no longer able to distract them. These people are often in denial about their true feelings, and their underlying insecurity requires them to validate their avoidance coping mechanism by shaming others into doing the same things as them.

A common feeling that is shared by many of us right now, is one of helplessness or uselessness. There is nothing we can do and nothing that can be done for us. We have no control over the virus or how our governments choose to react to it. Sometimes, these feelings can bleed into our other activities and soon we find ourselves thinking, what’s the point in doing anything if there’s nothing we can do. This apathy can quickly spiral into depression where we find ourselves wanting to do something but feeling too miserable and down-trodden to act on it. This then circles back to our original feelings of helplessness and uselessness.

Anybody who has suffered with depression before will recognise this kind of cycle, and if you’ve been lucky enough to get help, you’ll have your own coping mechanisms to dig your way out or to manage your feelings. But for a lot of people, this will be a new sensation.

For people who have never had to deal with this kind of depression and isolation, it can be terrifying not knowing what to do. Desperate to connect with people and know that they are not alone, these people go to social media where they are bombarded with all of the things that the “productive” people are accomplishing. They are asked “What have you been up to?” “What have you done?” and suddenly they feel like they have to justify themselves and defend their lack of activity. This will send them down one of two paths. Either they will force themselves to be productive, even though their heart isn’t in it, or the feelings of shame will confirm for them that there is something wrong with them and that they are lazy, useless and wasting precious time etc.

The first outcome will lead to frustration, exhaustion, possibly anger, and no task attempted will be given full attention or dedication and so won’t live up to the standards that the person is now expecting of themselves. This will eventually lead them to thoughts such as “I can’t do anything right even when I try” and a return to depression. The second option reduces self-worth and increases anxiety and depression as well as isolating them further by making them believe that they are the only people feeling this way. These feelings could easily lead to self-neglect or self-harm very quickly.

Depression is not an easy thing to overcome, especially if it’s your first time fighting with the beast, and I’m not going to pretend that I have an answer for you on how to break out of the cycle I described earlier. Honestly, the reason I’m talking about it in the first place is because I am stuck in it myself. But from my experience and knowledge I can present to you these thoughts and observations. I hope that when you read them, you believe them and that they can bring you at least a little relief if not show you the path out.

  • Processing trauma takes time and energy and is a different process for all of us.
  • This is something that has never happened to us before so there is no correct or incorrect way of dealing with it.
  • Just because a lot of people are doing something, does not mean that you should be doing it too or that it is the right thing to do.
  •  Acknowledging your feelings is the first step to accepting them.
  • You are the authority on yourself. Trust yourself, believe in yourself, focus on yourself. Don’t worry about anyone else. Their opinions can’t hurt you.
Anger

Anger

I have been angry recently. The anger comes and goes, just like the other emotions I feel, but I’ve been feeling angry for the past few weeks now and I don’t think it’s going away any time soon. I’m angry about the things that my body won’t allow me to do and I’m angry at the unwanted things that it does do. I usually use humour to make my disability easier (for myself and others) to deal with but I’ve found that by doing this I have made it so that the people around me don’t fully understand the difficulties that I live with. This then means that when the anger rears its ugly head, I end up getting frustrated and irritated and sometimes even aggressive towards people who laugh at me in the way that I would normally laugh at myself. Of course they can’t be blamed for laughing at me this way since I’ve already established it as an acceptable behaviour by doing it myself. But the point here is not that I feel victimised because I’m being laughed at, it’s just that the laughter implies that it’s not a vicious all consuming disease that is slowly stealing my life away from me.

I find myself in situations where I have to remind people that my life isn’t the same as theirs and that there are things that I cannot do, and that repetition just drives it home a lot harder and a lot more frequently than is comfortable. It also reminds me of my teen years when I suffered severely from depression and anxiety and therefore couldn’t work and rarely went out. People would call me lazy because they couldn’t see the illness that I was suffering with. This feels very much like that, like people can’t understand why I don’t do certain things because they can’t see the way that I feel and I’ve taught them to laugh at the illness as if it’s something that doesn’t affect me.

Only yesterday I was talking to a friend and fellow student about future career prospects. She said that she didn’t want an office job because she didn’t want to be cooped up and sat down all day, and I replied that I didn’t have much of a choice anymore. She asked why.

Last week I was talking to my partner about how I wanted to restrict our future children’s exposure to technology. I wanted them to have an old-fashioned childhood where they played outside instead of sitting on their consoles or tablets or phones all day. “Says the person who sits around on her phone all day” he laughed. I wanted to scream at him. Do you know how much I would love to go for a bike ride or camping or tree climbing or a long walk or play at the beach or go and feed the ducks or even just have a day out where I don’t have to plan everything in advance because I need to know where and when I can sit down and what the terrain will be like and how long I’m going to be on my feet and how far away things are and what time of day we’re going to be out and what the weather and temperature will be and if we’re able to come home quickly and what else needs to be done that day and how many people are going to be there and what’s expected of me while I’m there and how much enthusiasm will I need to put in. I ‘sit around on my phone all day’ because that takes little to no energy and after a 10 to 12 hour week that’s about all I have left.

So yeah, I’m angry. I’m angry because of all the things that I wanted to do with my life that I now seem unable to do, and I’m angry that people look at me and see me as lazy, and that no one seems to notice how hard I work just do as much as I do do. I’m angry because when I do take the time I need to rest, I feel like I’m letting myself and everyone around me down. I’m angry because life is hard every single day and I am alone in this fight.