In Dubai, but the pain is awful.

Got to Dubai late last night/early this morning. Flight was okay and it’s so lovely to be back. Didn’t sleep much last night and got up early to see my sister before she went to school. Then went back to bed for a nap. 

This morning was okay, pain wasn’t too bad and I managed to go out for a drive in my car, which was lovely. Then my pain levels started creeping up. Now the pain is awful, it’s so bad. Took one of my new Triptans but it hasn’t kicked in yet and I’m starting to doubt it’s going to help. Which won’t be a surprise as none of the others have helped and I’m now on the final type before I have tried every single type of Triptan. 

The pain is bad and so sharp. It’s times like this where I doubt how much longer I can cope for. 

Got a few nice things planned for the next couple of days, get to see my school counselor on Wednesday, then meeting up with my old PE teacher on Thursday who has just had a baby so we are going out for coffee, which should be nice. So looking forward to Wednesday and Thursday, just hope the pain isn’t too bad and ruins it all. 

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Update of sorts.

So it’s that time of the week again when I have loads of therapy. So it’s time for an update.

Had the doctors yesterday, unfortunately my GP wasn’t in so I had to see a different doctor taking her place which was annoying as she didn’t know my history so didn’t really understand. I asked to be changed onto the next preventative medication and to come off of Mirtazapine as it’s not working and I’ve been on it for over 3 months. So changed to the next and final medication Memantine (Namenda). I then asked for the next and last Triptan on the letter from my neurologist as the ones before haven’t helped. She then looked confused and asked why I was asking for more medication. Good thing I know my stuff and got her to re look at the letters from my neurologist and then she finally agreed to prescribe it for me. But if I hadn’t pushed it she wouldn’t have prescribed it for me as she didn’t understand why I was asking for two lots of medication. Don’t know what I’m going to do if these final medications don’t help though.

Saw my psychologist yesterday, went well. Got to continue with my thought journal and start challenging my thoughts as to whether they are fact or not. Which is going to be hard to do. She has given me some mindfullness recordings to listen to and attempt, so I’m going to try doing that over the next couple of weeks.

Then today I had my group therapy emotional coping skills course again. Was okay, didn’t really talk other to introduce myself to the person next to me. They brought up mindfullness for people with chronic pain and I really wanted to say something about it being really hard when your in chronic pain because you have to think about and focus on the pain and that can be really scary. But I didn’t manage to build up the confidence to say anything. So I just kept quiet. Not got it again till I get back from Dubai, going to miss one session cause I’m away as well.

I had been doing okay this week and I’m really looking forward to getting to Dubai for a couple of weeks. But now I’m starting to get more miserable again. I have realised that this week it will be a year since I tried to kill myself and was in hospital in the ICU for a few days. It’s been a year yet nothing has changed, I’m still in as much pain as I was when I tried to kill myself. And I’m no closer to getting any better. So I feel a bit lost, stuck and don’t really know what to do.

This time next week I will be home.

Next Sunday I am off home to Dubai, unfortunately only for just over 2 weeks. But that’s better than nothing. I was really upset that I had to leave Dubai and move back to England. I really didn’t want to, cried so much when I found out I would have to stay here for a couple of years, and I hardly ever cry. Despite what’s been going on. 

So this time next week I will be home. Reunited with my sister and my Dad. Am really close with my sister so it’s been really hard with me living in England and her living in Dubai. It’s been hard on my whole family to be honest. And I often feel guilty about it having to be this way, I wish it didn’t have to be but unfortunately it has to be at the minute. 

Although it will be different being in Dubai when none of my friends will be there anymore as they have all gone off to uni now mainly in England. But it will be good to spend some time with my family especially my sister. There’s a few other people that I am also looking forward to seeing as well. 

Also get to be reunited with my car. Haven’t been able to drive since I left Dubai as my licence isn’t valid in England. So I will be able to drive again which I am excited about. 

Really looking forward to going home for a bit. Hope this week goes fast, I want to be there already! 

Psychologist appointment and group therapy.

So yesterday I went to see my psychologist, She had given me some homework. I had to complete an activity diary, a pain level diary and a thought journal. Nearly every entry in my activity diary consisted of staying in bed, either on laptop in bed, watching TV in bed or listening to music in bed. A couple of times in the past week I went out, took my dog for a walk twice, went to the supermarket, and went to Tae Kwon-do a couple of times. Tae Kwon-do was really the only entry that rated more than 0 on my achievement, enjoyment and closeness to others scale. It was hard to rate my pain for my pain diary, I find it hard to actually evaluate my pain and put numbers to it. But I managed to do it anyway, had a relatively good week pain wise, pain only reached a 9 once and didn’t go lower than a 6. But for me that’s a relatively good week. 

So I showed all this to my psychologist. Told her I didn’t change anything so it was a true reflection of my week. She asked if I knew whether or not it was going to be as bad as it was (that I stayed in bed practically every day) I said yes because that’s all I really do other than go to Tae Kwon-do. She wants to get me out of bed and doing stuff that give me a sense of achievement and enjoyment. Asked me to think about what I use to enjoy doing before I got sick. And I really have no clue it was a long time ago, and I now have the worst memory ever so I have no clue. So got to think about that for next week. 

Today I went to group therapy, which is an emotional coping skills course. It was horrible. I hardly spoke, the only time I did speak was when I had to introduce myself to the person next to me, so I just told her my name and that I like Tae Kwon-do and am a black belt. Other than that I just listened. We went through what the course was going to entail. And started a bit on mindfulness. Which I have tried but find it very hard because of the pain. Was asked to focus on our feet for a minute which was okay, was a bit hard because whilst I was focusing on my feet all I could feel was the pain and so my thoughts were clouded by that because it demands so much attention because it’s in my head. We were then asked to focus on our thoughts and write down our trail of thoughts. Mine consisted of ‘The pain is really bad’, and then it stopped there because that was literally all I was thinking about. I haven’t got any problems with the practice of mindfulness, I believe it’s a really good tool to have. It’s just putting it into practice which is hard, especially when there is pain involved that demands your attention every second.

At the end I went and spoke to one of the women who run the course. I asked her if I had to continue seeing my care coordinator/psychiatric nurse to be able to do this course. (If you read my blog you will know the issues I am having with my psychiatric nurse, basically he is rubbish, I don’t feel able to talk to him and tell him stuff honestly and I don’t really like him) I explained this to the woman who runs the course and she basically said I either have to suck it up and deal with it, that I’m not doing myself any favors by not being honest with him, though I explained the reasons behind this, and it’s not really my fault if I don’t feel able to talk to the guy. Or she said I have to be honest with him and tell him I don’t like him. I wasn’t happy with either of these suggestions, and was pissed off that she was basically telling me to suck it up and deal with it. So I spoke to my mum when the course finished and got her to ring up the place where my psychiatric nurse comes from (I don’t do talking on the phone, makes me anxious.) and ask for someone different, yet again. So this time we have asked for a woman, to see if that makes a difference. Not that I have a problem with men, I had two male psychiatric nurses on the hospital at home team in the beginning who were really nice and I liked. But I have had no luck with the two male psychiatric nurses I have had from the longer term program.  

Have to give the group therapy another shot next week before I decide whether or not I want to continue with it or if it’s not for me. Hopefully next week will be better. 

Was just told I am lucky.

So I was talking with a close friend of mine earlier who has just moved into uni. She asked me what have I been up to, I was honest and said ‘nothing really, have hardly left my bed all week’ She replied with, ‘you’re lucky’. 

The reason I haven’t left my bed is because I’m in too much pain and too depressed to do so. That’s not lucky at all. If I was able to leave my bed and do stuff I would, but the fact of the matter is I’m not. This friend knows my troubles and knows I’m sick and in pain, yet she replied with that. 

I know they don’t usually mean to offend but it gets on my nerves. She’s the lucky one, she’s off to uni, she doesn’t have health problems that stop her from doing what she wants, she’s pretty much normal. I wish I was, I wish I was able to finish school and go to uni like her, but I can’t. 

I’m forever having people say I’m lucky. It use to be you’re so lucky you don’t go to school, shortly after I dropped out of school. Or it’s you’re lucky that you don’t have to work. I don’t go to school cause I can’t and I am unable to work also. If I was able to I would, but I’m not. 

How would you like it if you had health problems that stopped you from doing things and doing things you want to do. I bet you wouldn’t like it either and wouldn’t consider yourself lucky. 

 

30 things.

30 Things about my invisible illness you may not know:

1. The illness’ I live with is: New Daily Persistent Headache (NDPH) Postural Orthostatic Tachycardia Syndrome (POTS) Elhers Danlos Syndrome Type III (EDS III)

2. I was officially diagnosed with it in the year: June 2011

3. But I had symptoms since: NDPH Since 14th January 2010 and POTS since 2005

4. The biggest adjustment I’ve had to make is: Learning that I can’t do everything and that doesn’t make me a failure.

5. Most people assume: That I’m lazy, faking it or exaggerating.

6. The hardest part about mornings are: Waking up and realizing that I have to spend another day in constant pain.

7. My favorite medical TV show is: House and Greys Anatomy

8. A gadget I couldn’t live without is: Laptop.

9. The hardest part about nights is: The pain is usually at it’s highest at night.

10. Each day I take __ pills & vitamins (no comments please): At the minute 4 different types and injecting 3x a day. It has got up to over 10 different types of medication though.

11. Regarding alternative treatments I: Have tried, Osteopathy, Physiotherapy, Acupuncture, Massage, Reiki, you name it I’ve probably tried it.

12. If I had to choose between an invisible illness or visible I would choose: Visible.

13. Regarding working and career: I had to drop out of school last October on my 3rd attempt of year 12. And I am unable to work.

14. People would be surprised to know: That I’m actually sick, and that’s the reason why you think I’m lazy and that I most definately am not faking it.

15. The hardest thing to accept about my new reality has been: That I can’t do every single thing I want to do, and having things taken away from me that I’ve wanted to do but can’t like school and university.

16. Something I never thought I could do with my illness that I did was: Pass my driving test in Dubai.

17. The commercials about my illness: They don’t exist, most people don’t even know that my illness’ exist let alone have commercials about them.

18. Something I really miss doing since I was diagnosed is: Being able to go to school and participate properly.

19. It was really hard to have to give up: School

20. A new hobby I have taken up since my diagnosis is: Lying in bed and watching TV series does that count?

21. If I could have one day of feeling normal again I would: I don’t even know.

22. My illness has taught me: That you should never take a pain free, healthy normal life for granted.

23. Want to know a secret? One thing people say that gets under my skin is: When people say i get headaches NO I have ONE headache, headaches implys that it comes and goes that is not correct it has never gone.

24. But I love it when people: Ask genuinely how I’m feeling.

25. My favorite motto, scripture, quote that gets me through tough times is: I don’t actually have one, I’m quite a negative person (don’t tell me that I will feel better if I’m positive tried that it doesn’t work).

26. When someone is diagnosed I’d like to tell them: Keep fighting and stay strong, you are not alone, the chronic pain and illness community is actually quite big on facebook and the blogging community.

27. Something that has surprised me about living with an illness is: Just how sick I actually am and how much pain I am in all the time, I never thought this much pain existed, I was wrong.

28. The nicest thing someone did for me when I wasn’t feeling well was: My sister giving me a cuddle and kissing my head to make it feel better.

29. I’m involved with Invisible Illness Week because: It’s so very important to spread awareness of invisible chronic illness’ as it’s the only way we will get rid of the stigma of ‘it’s all in your head’.

30. The fact that you read this list makes me feel: Great, Thank you for taking the time 🙂

General update.

Haven’t been feeling so great. With my Triptans not working and the Mirtazapine I’m on as a headache preventative not working either, I’ve been dealing with a lot of disappointment. 

I’ve also been feeling quite lonely, miserable and stuck. All my friends are off to uni like this weekend. They are all moving on with their lives and I’m just kind of left the only way to describe it is stuck. And I’m angry. Not at them, but at everything. At the fact that I’m not normal, I’m sick, and I can’t go to uni like everyone else. 

Then today there was a stress with my medication. I was meant to now be getting my POTS medication prescribed by my GP, instead of my POTS professor in London. Got a call from the pharmacy today saying that less than a months worth of only one of my 3 medications was going to cost just under £500. Which is ridiculous as it never costs that much when I have previously got my medication from up in London. So my mum made some calls, and found out we can get my medication from the hospital in London where my POTS professor works at and we could get a 4 months supply for under £50. Compared to just under £500 we were quoted from the pharmacy at my GP’s. So I emailed my professor and asked if he can do me a prescription and if I could pick it up next week. I run out of one of my meds on Tuesday so if I can’t pick up the prescription and get it into the pharmacy before Saturday so they can order it in cause it’s quite large quantities. Then after Tuesday I will go into withdrawal. Which means I will be blacking out, fainting and having what looks like a seizure all over the place. So that’s not good. Waiting to hear back from my professor now to see if he can do it in time. 

Saw my psychologist today. She gave me some sheets to fill in. Ones a pain diary, another is an activity diary and the other is writing down when I’m specifically feeling bad and what happened. So I’ve got to do all that till I see her next week. 

Also my flights are booked back to Dubai for 10 days on the 29th of September, so just over 2 weeks to go till I get to go back for a bit. Which I’m really looking forward to.