Things Have Been Difficult - The Juggling Game

As I alluded to in my last post, things were beginning to become a little challenging. In typical me (or M.E.) fashion, I started to relapse or crash or whatever you want to call it...I managed about 2 weeks of doing my extra course that required A LOT more effort, travel, carrying things, walking... and then it started...

Photo Taken by Me 

It's so disappointing. No matter how long I have been ill, I have still not managed to shake the disappointment resulting from yet another of my attempts at doing something, and then suffering for it.

I staggered on, missing one class of my language class, then managing one, then missing one and now it's the half-term break from both courses and I am sighing a big sigh of relief and trying to rest and relax and not focus on studying for a little bit. The good news is that while I enjoy my original language class, I actually only have one left after half-term, and for that I am grateful because I definitely would not manage to keep this non-sick friendly pace up any longer than that.

As a result of this whole situation, I did have a moment of self-doubt when I wondered: is LDN even doing anything?

On reflection, I realised that it seems to be working in a way I had not anticipated. Rather than being a miracle cure, which for me it is clearly not (and I didn't expect it to be), it actually seems to be preventing me from having progessive disease symptoms. I hadn't really thought about that before I took it and I hadn't really realised that it had happened. I had assumed LDN would just make me feel a lot better - not cured, but massively improved. In some ways it has made me feel better, although if I am honest it has been less than I had hoped. The biggest thing is that, for a long time before LDN, I was getting progressively worse, which was scary and very unwanted. Now, I am still sick in a big way, but it's sort of stagnant and stable. That is to say, I seem to be hovering in a 'range' of illness, rather than getting better or worse. The relapse fits within this range. It essentially feels the same as how I felt when I started taking LDN and was really struggling to cope with my body's reaction to the drug, so while it is still frustrating and a wee bit scary, it's not worse than before. If I obey the body and actually rest and pull back on activity a lot, I start to feel a bit better again... probably quicker than I did before taking LDN. So maybe it is fair to say my 'bounce back' factor is increased/faster?

I think it is useful to analyse in this way because I am definitely not going to stay on LDN if it is not doing a thing for me. I also think it can be easy to get used to how things are and forget how they were. At the moment, I have decided to order another batch of LDN, to gradually increase from 3.5 to 4.5, and try that for a while before making a decision over whether to continue it long-term.

Anyway, this whole experience coincided with me making a decision about whether to go ahead with hairdressing training in September. I basically had to make a decision within the next couple of months over whether to apply, and I was finding that a really stressful situation to be in. I think my difficulty was a mixture of me knowing that it would be a useful qualification for me to add (especially from an earning perspective) to my education, combined with me knowing how unwell I am, and how difficult I find it to even manage doing a few hours a week of studying... let alone a couple of days of physical activity, plus studying. I actually felt quite scared of the commitment and of signing up for something that I couldn't cope with, but felt compelled to stay on at because I am not a quitter and the financial commitment to such a course is massive and non-refundable. So rather than put myself through this, I have decied to postpone any attempts at achieving this goal, and to concentrate on my business and getting my health better.

Things Have Been Up & Down

As per usual, things have been up and down since I last wrote. On the positive side, I have been doing more for a while, but on the negative side, doing more has lead to me having lots of mini-crashes or PEM (post-exertional malaise). Exertion doesn't have to be 'exercise' as we might think of it... leaping around, running, cycling or even walking, but just doing more physical and mental activity in any form.

Once a week, I have been walking and carrying a heavy bag, plus standing more than normal and using my arms quite a bit. I noticed that, surprise surprise (not), it's erradicating the rest of my week. It is taking me so long to recover from it, that by the time the situation that requires me to engage in this non-M.E. friendly behaviour rolls around again, I haven't even recovered from the previous week's aftermath.

I don't want to complain, because the fact I am even managing to attempt all this physical stuff in the first place is amazing compared to pre-LDN where I was basically housebound except for the odd trip out in the car with mum. I just think it's a bit difficult to know that you are basically sort of making yourself unwell - in my case I am doing this because I need to for my career/profession and it's basically unavoidable. The good part being that it is not an ongoing thing, it does have an end date. I definitely would not be able to manage without an end date.

In better news, I found out I finish German class a week earlier than I thought, which is good. Not because I hate it or anything; I really do enjoy it, but because I find it so draining! It's first thing in the morning so I have to get up early. Since M.E. I have always struggled with getting up early and once I got thyroid problems, it has become almost impossible to rouse myself before 9 a.m. and be functional. Another thing I noticed is that if I do get up earlier, I basically use up my energy earlier, so I have to come to bed in the afternoon. On top of this, I find my brain is a. not working properly first thing in the morning and b. I find learning a language is mentally (and thus physically) fatigue inducing anyway... so all in all, I shall be glad to break from that.

To top everything off, Millie (my Yorkie) had a bad epileptic fit on Wednesday afternoon. We had to rush he to the vets. She was diagnosed with epilepsy. She has actually had 4 fits before, but was never diagnosed (the vets just advised us to monitor the situation) - 3 of them were when she was much younger and  she one partial one last year in the midle of the night. This recent one was bad though, and very upsetting to watch. I am just hoping she doesn't have them any more frequently (or at all) as if she has less than 1 per month the vets won't medicate her... and I would rather not medicate her as a. it's expensive and b. it has horrible side effects. Of course this whole drama caused me so much stress, that I haven't been good at all since. I feel like a ragdoll, zombie person. She, on the other hand, seems to have recovered quite well!

M.E. Awareness Day & Explaining Fatigue

Today is M.E. Awareness Day, and I am a little late in posting this, but hey ho...

I wish I could have attended, but with all the stuff I am already doing, I am struggling to manage so there's no way I could have done that too. Maybe another year I will be able to go.

I have done some M.E. advocacy work in the past, particularly when I worked in offices - for example, I organised an information sheet when I worked in one office and gave a little talk about M.E. A lot of the time people had/have no idea I have this disease as I hide it well. I have had so much stigma in the past, that it has become easier to pretend there's nothing wrong or to just remain vague. I sometimes feel bad for doing that, as if I am doing a disservice to the M.E. community, but I guess that I even that out a little by writing this blog and when people do actually ask me for information in person, I try my best to educate them that it's definitely not just about: "being tired all the time".

When I was younger, other people retorting that they were tired all the time... too, as if that was all it was about, used to really annoy and upset me. It was invalidating. I felt frustrated at my inability to put my point across and to fight my corner, but then the reason I could not do that was partly because I have M.E. and the cognitive function is not 100% working or present in the way it should be. Nowadays I do still get people who assume that M.E. is being 'TATT', but it doesn't affect me in the same way that it used to. I understand why people make the assumption. It sucks, but I get that they don't mean it personally. I have a kind of resignation to the situation: that they will never understand, unless they are afflicted themselves. It's been liberating to be able to get to that place and to accept that this may be something I cannot change.

I think on the whole the general public are quite ignorant about chronic diseases like M.E. When a person says they are exhausted or tired or fatigued, I try to remember how I felt like when I didn't have M.E. and I felt tired. I know this sounds a bit weird, but I remember there is actually a healthy tired. It's the kind of feeling after exerting yourself by going out for the day, and then feeling ready for bed, a nice refreshing sleep and waking up in the morning feeling ready to face a new day. People with M.E. don't have that type of tiredness, nor do they have good sleep, or wake up feeling refreshed. It's not even tired, it's as if the car has run out of petrol/gas: there's nothing there... no flicker of energy, no spark of life... when even cutting up some food on your plate and getting it to your mouth becomes too exhausting, that's not normal nor is it healthy and it certainly is not just 'tired'.

If only being tired were the M.E. sufferer's sole symptom, who knows, it might even be bearable to have chronic fatigue syndrome (as some people like to call it), but it's not... the whole system is affected. Every single area of the body's function seems to be affected: heart, brain, nervous system, endocrine system, musculoskeletal system, lymphatic system... even urinary/renal... I can't even remember all the affected areas... but anyway, it's like a computer being corrupted by a virus: eventually nothing works and it kinda implodes. Okay, so I haven't imploded yet, but I have noticed that over the many years of living with this disease, I have gained more and more health issues outside M.E. and there have been a lot of times where I have expressed a feeling of my body 'falling apart' so to speak... progressively getting worse.

So that's my explanation for the year!

My TV died... and so did my hen!

The week that has just passed was not bad, per se... it was quite good, but two things happened that were sad:

Dottie, RIP

First thing: my favourite chicken died. Dottie my favourite because she was the tamest and she used to talk constantly, which was very cute. She would come and eat dried mealworms out of my hand, all the time giving a little hen commentary, while the other hens looked on jealously because they are not so brave... eventually one of them would pluck up the courage to join her. The thing that is sad about her death is that she was not old: only 3. She died peacefully, with her little eyelids closed shut. My dad found her on the lawn... just lying there. I cried some tears and then had a bath and tried not to think about it.

Secondly, my TV died. I have a TV in my bedroom because so much of my life is spent in or on my bed. I otherwise am not an advocate of bedroom TVs, but without one in here I would a. miss out on shows that I find quite informative, b. die of boredom, and c. - heaven forbid - be stuck to my laptop (which is very draining for me) watching catch-up shows. So yeah, the TV was an oldish one... oldish in my TV-age-analysis is anything over 10 years; mine must be at least 12 because I remember having it when I was about half-way through college. Funny thing is, it's a really random brand that I have never heard of and I am sure it was bought in Lidl!! It has lasted quite well, all things considered.

So anyway, I banged the set, and tried fiddling around unplugging and replugging it, and... nada. After I finally admitted defeat, I decided to look online the next day at TVs. Well, TVs are a lot more expensive than I remember... even a small-ish one, which doesn't really exist anymore... 19 inches is generally the smallest, although there was a random one that was something like 15.something. I remember you could get a TV for 50 or 60 pounds. Now it's 90, or more likely 110 or more. I am still searching, although I am not sure what I would even consider payable right now. I don't really have 'spare' money. I already put off buying a HR monitor as I realised I have a couple of birthdays, father's day, and my dog's vaccinations to pay for over the next few months, as well as all the usual stuff like parrot toys (they get through them!), pet insurance, and the monthly credit card payment... so a TV is not really happening. Argh. I guess I should have set up a 'rainy day' fund. Maybe this is my prompting!