"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Long day. Picked up results at about 8.40am, which meant I left at silly o’clock. My appointment at the CFS clinic was at 11.30am, so we decided to go into Gateshead. On the way to the Metro station one of my footrests fell off. I was able to hold it in place with my foot until we bought some duct tape in Gateshead, where we bodged it back together.
Went around the shops until my appointment. Didn’t buy much, just shampoo, conditioner, duct tape and chicken Bovril (it’s for a recipe).
Went to my appointment, and it went well. They agreed that my mental health problems/autism are not my main issue (though they’re contributing), and there was a definite onset of new symptoms following the bout of Swine flu I had in August 2009. They have offered me Graded Activity Therapy, which looks good. Combines pacing and activity with the aim of gradual improvements. They’re also going to contact my social worker over me getting a walking frame, as I need something more steady if I’m going to be starting to walk again. I also have colour charts and activity diaries to fill in.
Went to the MetroCentre after the appointment, which was okay, but stayed out too long. Spent all day since then in or on my bed, alternating between resting and messing around on the laptop. Johan has also spent the time feeding me and taking me to the toilet.
Didn’t sleep much last night, as in too much pain (toothache on top of normal pain in arms and legs) and wasn’t well enough to go across the room to find painkillers.
Had to be up early this morning because I had my appointment at the CFS clinic. Threw up on the bus (I was prepared with bags, luckily) and felt really rotten travelling, but wasn’t too bad when I got there. They wanted to go through all my history, and there’s a lot of it, so I have another appointment in a month.
The photo was taken on the way back- the man sitting near us was wearing a shirt, tie and smart trousers, with colourful stripy socks š It was good.
Went to the MetroCentre on the way back, heading to Asda. Found (and bought) a new penguin!It’s one of the ones from Madagascar. In Asda bought a new pair of wellys (they’re a size 9! and purple! and girly!) and a new dress that should be long enough to wear by itself š Also got a salad, cherries and shortbread, but was feeling really ill by this point so we paid and went home.
Went for a nap when we got back, as I was knackered and in agony. Woke up and took painkillers, then had a bath. Also cancelled carers as I was in too much pain to deal with the one I don’t like.
After my bath, lay on my bed for a bit, then went on my computer to do dailies. Completed the Filling the Moonwell part of the Hyjal dailies, and did an epic storyline to kill Leyara š Also was sad after doing the locket quests š
Still in a lot of pain after full dose of painkillers. I need to make an appointment with the dentist (though I’m waiting to have the tooth removed) and see the doctor about the nausea and vomiting as it’s getting a bit difficult to cope with now.
The plan was to go to sleep earlyish (around 2am), so Iād be able to wake up before the afternoon. That didnāt exactly happen, as my hand and arm decided that they were going to be too painful to sleep.
I have given up now, taken some painkillers, tried (and failed) to distract myself in World of Warcraft (turns out I use my right hand a lot to play it :-p) and am now writing this.
Despite me being up all night, my M.E. isnāt playing up too much. I donāt have the massive leg/arm jerks that launch me off the bed. Instead I get little ones that last only a few minutes, rather than a few hours. Much more manageable. The pain is normally bearable, and if itās not, painkillers normally bring it down to that level. Iām normally awake 12-14 hours a day, which is great. Iām normally out of bed a few hours a day. The best thing is, this is without causing relapses. I do have to spend more time in bed if Iāve gone out, or had a cold or a tummy bug, but thatās okay.
I still canāt walk, really. I can sometimes take a couple of steps across the living room, but by the second step Iām starting to fall, so I only do it to get to my bed when I feel I can (I can cross the living room in one or two steps normally). This is because I think itās important for me to test myself on what I can do, so I donāt get deconditioned from not walking, and so I donāt forget how to.
Standing up happens sometimes. Again, itās normally me testing myself, often when Iām trying to use the toilet or something. Often I canāt do it at all, and thatās okay as well. Iām trying to listen to my body- push it a little bit, but not so much I relapse. It seems to be working.
The carers is still an issue. Most of them now Iām fine with. My favourite carer is absolutely amazing, and I get her most mornings and the occasional evening. If I could, Iād steal her to be my carer all the time. She can do in 45 minutes what it would take me when well a week to do šĀ There are others that I get on with quite well, like the one who came and did my bath last night. I didnāt find her as easy to get on with as favourite carer to begin with, but Iām now quite comfortable with her helping me and things. To be honest, I wouldnāt mind stealing her if I couldnāt have favourite carer, as sheās lovely and does things, just maybe not as quickly as favourite carer :-p
There are other carers though that make me very anxious, just by them being here. One of them makes me outright panic just by being on the rota. So far, I’ve manage to spot it and cancel whenever sheās on it. There are some that Iām okay with coming to help with just getting changed and housework, but who make me really anxious when they help me with my bath. I donāt know why that is- Iām about as unembarrassed about my body as I can be (Iām quite happy to be naked in front of other people, including males, though Iām aware now that they may not be (and it took me until I was over 16 to learn thatā¦) so I try not to be) though I do get a little self conscious when washing myself, more because I always feel Iām doing it wrong when Iām being watched :-pĀ Thatās easily solved though by asking the carer to leave the room for a few minutes while I do so (Iām too big to drown in the bath once Iām in safely). I dunno- maybe Iām picking up on anxiety on their part?
As my most recent Project 365 showed, I have received my Blue Badge! This means whoever is driving me places (such as Colin or staff at college) will be able to park in disabled bays without bother, and wonāt have to pay parking costs a lot of the time. Iāve also got my application in for a disabled bus pass, which will give me a lot of freedom when Iām well enough for day trips, as Iāll be able to use it to go into Northumberland without paying the earth. Prudhoe watch out :-p
Weāre going to Leeds next month as itās my father-in-lawās 70th birthday. Heās nearly as old as my nana :-pĀ I still need to book train assistance, but the hotel is booked for two nights, and Iāve paid for the train tickets. Staying two nights should mean less pressure on rest and things, and I may even get to see something while Iām there (other than Johanās family, of course).
Iām hoping some of my other parcels arrive today. Iām expecting some shoes, some egg cups, and some micro USB cables. Iām also waiting for a Wreck This Journal and a purple Blue Badge holder, but they may take a bit longer to arrive. I also need to do an Asda order, or at least a shopping list so that Johan can go and get some items. I really fancy watermelon.
World of Warcraft has been a bit iffy. Iām still enjoying it, but Iāve had a couple of bad groups in there that donāt help my very low confidence in my healing abilities. I know theoretically that Iām actually not that bad at healing, but it doesnāt stop me being knocked everytime I get yelled at. Today it was because I didnāt feel comfortable trying to use my crowd control (mind control and shackle undead) as everytime I try to use it, I die. I even did today. We did have a DPS shaman and druid in the group, so it wasnāt like we didnāt have any, but they kept insisting. I ended up dropping group because it was making me that anxious. I felt really guilty afterwards, especially since Iād queued with a guildie (the druid) but they said they understood why Iād dropped group. The guildie covered for me by saying I had a raid :-pĀ I have killed some raid bosses though, so Iām happier with that.
Since I finished college, Iāve noticed Iāve had more concentration for things like television shows and reading childrenās books. Itās still not great and Iām not taking much in, but at least I can do it now without my mind wandering every few seconds (itās every few minutes instead). Iām going to watch the Harry Potter films in time for the last one coming out. If I watch one or two a day, Iāve got plenty of time. I can even watch them from bed, so use less physical energy š
Iām still majorly struggling to write emails, comments and letters. Iām also overwhelmed by Twitter and Facebook, though I still look at them. Iām also on Google+, which is cool šĀ I donāt know if itāll replace Facebook, as there arenāt that many people using it yet, but itās fun to mess with at the moment.
Oh, I also am very very slowly starting to use the phone again šĀ This is a big thing, as my phobia got so bad I wasnāt even able to talk to people I know very well on it without a panic attack. Iām starting with scripted calls, but will hopefully expand that as I get more used to it. Iāll probably never be fully comfortable with it, but being able to use it if I need to would be awesome.
Iāve also been very naughty and taken myself off my antidepressant. I donāt think it was ever doing anything for me, other than making me sleep. Iāve not noticed a decrease in mood since coming off it, though both Johan and I are monitoring it closely. Iām also slightly more alert when I get up, which is a bonus šĀ Iām not coming off the antipsychotic yet, as that was doing a lot for me and I want to see how things go. At some point I should probably tell my doctor Iām not taking the antidepressantā¦
Project 365 is going well, though Iām starting to run out of things to take photos of in my living room. I donāt get much in the way of interesting post unless I buy something (I do get the odd bill though) so Iām not sure what Iāll be photographing soon. Itās been fun though, and itās been a way to blog daily without it feeling like a big effort.
Johanās not doing so great though šĀ His anxiety is really bad, as is mine (it was before coming of the antidepressant- itās been no worse since then) and they seem to be feeding each others, which is bad. Heās also struggling to find the motivation to do things. His emergency referral since being in hospital still hasnāt been completed though, which is getting ridiculous. Iām worried heāll end up that ill again (especially since the stress of the carers isnāt helping) though heās adamant that heās not going back into hospital. I think it may be time for me to start chasing things.
The pain has now eased enough that I may be able to sleep, so I think Iām going to leave it there.
So, I failed with the 30 Day Song Challenge. I’m currently not well, and have spent the last three days in bed (though I did manage to get a bath today, which helps make me feel a bit more human at least). I can’t sit up for more than a minute at a time right now without feeling really dizzy and faint, and having really bad pains in my back.
Anyway, it’s International M.E. Awareness Day today, which is part of M.E. Awareness week. Last night I recorded a video about it. How I am in the video is my normal “bad day”, if that makes any sense. It’s not the worst I’ve been, but I can be better.
1. The illness I live with is: ME/CFS ā Myalgic Encephalopathy/Chronic Fatigue Syndrome
2. I was diagnosed with it in: October 2010
3. But I have had symptoms since: September 2009 (or August 2009, if you include the Swine Flu I had first)
4. The biggest adjustment: Slowly going from someone who was fiercely independent, to having to accept help from Johan, and then from strangers.
5. Most people assume: That if I can do something once, I’ll be able to do it again or on another day. The illness is so variable that it’s hard for me to make plans, and I know that it can upset people when I say I can’t do something. Luckily, up to now most people have accepted I’m ill, which I know is difficult for other people with M.E.
6. The hardest part about mornings are: Actually waking up, and then staying awake for any length of time. I’m also often in a lot of pain first thing in the morning so I can’t judge if I’ll be able to get up that day. Having to get up when my carers arrive (if I can) is also difficult.
7. My Symptoms: Constant flu-like exhaustion, severe pain in my muscles and joints that are only partially helped by strong painkillers, constant headache and sore throat, muscle spasms- mostly in my hands and legs but also elsewhere, temporary paralysis in my legs and sometimes my arms (for a few hours), brain fog (short term memory problems, concentration issues, muddling words), muscle weakness that is so bad that I can’t walk or hold a pen, intolerance to light, noise and touch.
8. A gadget I couldnāt live without is: My computer, a laptop and HTC Desire. It means I can still do stuff when stuck in bed or my flat, and I can still attempt to study for my AS Level. Although not a gadget, my wheelchair is also brilliant as it means I can go out on good days.
9. The hardest part about nights are: Waking up multiple times from severe pain, and being too weak to be able to take any painkillers. Also needing the toilet, as I can’t get there.
10. Tablets a day:High dose (20,000 units) vitamin D for severe vitamin D deficiency three times a week, 50mg quetiapine and 50mg tramadol at night for my previous mental illness (which also help me sleep), 30-60mg nefopam up to three times a day for pain, 400mg ibuprofen up to three times a day for pain, 30mg lansoprazole every morning to protect my stomach from the ibuprofen.
11. Regarding alternative treatments: None so far. There are some I wouldn’t try, but I wouldn’t rule most out if I could access them and I thought they would help.
12. If I had to choose between an invisible illness or visible I would choose: Hard one š I had an invisible disabilty anyway (autism/dyspraxia), so M.E. is actually slightly more visible, as I use a wheelchair. I’d go visible if I have to choose, as it is more obvious.
13. Regarding working and career: Not happening right now š I attend college when I’m able to, doing an AS Level in Computing, which only works because I get a lot of support and understanding at college. I’m wanting to go to university to do Computing and Networking, and then become a network administrator, but it may be that I have to delay it. I also have a backup job option of being a computer programmer if I’m not well enough to do network administration, because I can do that from bed š
14. People would be surprised to know: Despite all the moaning and grumbling I do online, in real life I’m normally quite positive and happy š I also feel that being physically ill is a lot easier to deal with than being mentally ill (at least for me). The moaning and grumbling online is because I’m still not used to being this ill, and change is bad š
15. The hardest thing to accept about my new reality has been: That I need so much help with things that when Johan had to go into hospital, I had to go into a care home. Also, not being able to be intimate with Johan, as any touch is too painful.
16. Something I never thought I could do with my illness that I did was: Recover from depression š It’s probably not due to being ill (though the enforced rest helped), but I would have thought that the illness would help keep me depressed.
17. The commercials about my illness: Don’t exist. Which is wrong.
18. Something I really miss doing since I was diagnosed is: Reading long books in one sitting. Going out whenever I fancied it, rather than only when I’m well enough. Being able to meet up with friends. Being able to manage a full week at college. Being able to stay awake for more than a few hours at a time.
19. It was really hard to have to give up: Being independent.
20. A new hobby I have taken up since my diagnosis is: Napping during the day š Seriously, I’ve not really taken up any new hobbies, but I appreciate the one I have continued with (playing World of Warcraft) a lot more.
21. If I could have one day of feeling normal again: I’d probably just go to college, without my wheelchair, and spend time with my friends there and go to all my lessons š Also spend time with Johan afterwards š
22. My illness has taught me: That good friends will stick with you no matter what, and there are plenty of people who are willing to help, even in small ways such as opening doors and things. There are also people who don’t like moving from the wheelchair bay on the bus, which can be frustrating.
23. Want to know a secret: To manage college, I’ve basically given up everything else. I don’t even play World of Warcraft that often any more. Also, my main rule for whether I’m well enough to go into college is can I keep my eyes open and sit up? If so, I go in. This is probably not doing my health much good, but so long as I can get through my exam it’ll be worth it.
24. But I love it when people: Offer to help, with specific things. Open questions are very difficult for me to deal with, so things like “do you need anything?” or “anything I can do?” makes me panic. Also, when friends understand if I don’t reply to messages, or don’t make contact that often.
25. My favourite motto, scripture, quote that gets me through tough times is: It’ll be okay in the end.
26. When someone is diagnosed Iād like to tell them: To listen to their bodies, accept help if it’s offered, and rest. Also, there are no guarantees with this illness, so don’t worry too much if you get worse- there’s a good chance you’ll get better as well. It’s also very individual- what happens to someone else may not happen to you- which includes treatments and things.
27. Something that has surprised me about living with an illness is: Just how variable it can be, even through the day. Also that even little things can cause a big relapse, and that you just have to go with it.
28. The nicest thing someone did for me when I wasnāt feeling well was: Visited me in the care home š It made me feel much better. Also friends who are understanding and try and make things easier for me.
29. The fact that you read this list makes me feel: Happy that you’ve maybe learnt a little bit about this illness š Also amazed you’ve managed to read this far š
30. Something I want people to take away from this: M.E. is a real, physical illness. It can vary a lot- one day someone with it may seem perfectly fine, but underneath they may be struggling, and if they do too much they could end up unable to get out of bed. It’s also variable, so some people my have it mildly, whereas others may be so severely ill they have to stay in a darkened room, be tubefed, and cannot tolerate any noise, light or touch.
