Roses For The Invalid in Scottish Meanderings

I'm still not right but I'm starting to feel a lot better than I was.

Most of last week was spent in bed. This week has panned out thus:

Thursday - in bed all day. Up at teatime because Ian (oldest brother) texted to say he was through seeing Craig (son) (turned out he'd driven 4 hours to see me because he was so worried) - took an extra tablet which enabled me to get up, get dressed, wash my hair and get to ASDA to fill my prescription before he came over. It was great to see him. He stayed till after 10 p.m.

Friday - in bed all day. Very shaky when I got up at teatime but managed to write for 3 hours.

Saturday - good day. Managed to stay up and caught up with a lot. Also did some housework.

Sunday - in bed until 4 p.m. Forced myself to do a bit of hoovering. Struggled to finish it.

Monday - in bed until 3. Forced myself up to go to JobCentre (was supposed to hand in a Medical Certificate) but was too shaky. Made it to the postbox and posted it instead. Did a little cleaning.

Tuesday - in bed the whole day. Up at teatime but fit for nothing but watching the iPad.

Wednesday - up all day - no nap needed at teatime. Nikki, Lily & Lilah round in the afternoon and coped fine.

Thursday - Sleepy all day. Tried to stay up but had to give in and lie on the bed at 11.30. Stayed there until 3 p.m. Up but still sleepy. Caffeine and sugar has helped slightly.

Today - in bed all day but only because I had no sleep until around 6 a.m. this morning (for no apparent reason) and also because I want to be well tomorrow.

It's almost like the minute I do any moderate activity I have to pay for it next day and sometimes the day after that. By the way sleeping/napping during the day doesn't affect my sleep at night - these whole nights of insomnia are random and have occurred without rhyme or reason since I became ill 2 years ago.

On Wednesday Nikki texted to say she was coming into ASDA (about 5 minutes away from me) so asked if I needed anything which was great as I was in dire need of cat litter. Asked if I was up for a visit afterwards which I most definitely was and it was really nice to feel well enough to enjoy being with them. I opened the door to Lily holding a dozen pink roses (seen here on the windowsill) and a packet of maple syrup pancakes! She chose the pancakes :) There's a radiator underneath that window though and the flowers were looking a bit wilted today so I've shifted them to the other side of the room. I don't know why this photo came out so dark - it was a sunny afternoon and all the other photos I took were fine.





It was brilliant to get hugs from the girls. The big one included! Even in the short space of time that I haven't seen them properly I can see a big difference in Lilah. Her talking has really come on in the last couple of months - a lot more words coming out now and the occasional proper sentence now & then. She's a right wee character.



Lily seems to be suffering a little due to Lilah's cuteness though. She's really good with her but I think she could do with some extra attention just now. She was very taken with playing the piano 'properly' yesterday. Normally the two of them plonk out any old noise but Nikki picked out the notes of Mary Had A Little Lamb with one hand then zapped off to the loo and Lily wanted to know what notes she'd played so I showed her. She spent a good 10 minutes repeatedly trying to play the right notes the right number of times - I was really impressed. Nikki said she'd pay me to teach her so I said as I'm having serious thoughts about deferring my course at University at the moment I promised her if I did end up doing that, I would try and have Lily round once a week and teach her simple nursery rhymes if she wanted to. And she could save her money for proper tuition - I'm happy to start her off but I'm not trained to teach music so if she was coming on well, it would make sense to get her to a proper teacher.

And I'm really glad they came in and cheered me up because when they went off home, I noticed a voicemail message on my phone. It was the counselling agency. They wanted to know if I'd be in the next day. I was all set to go in but knew I couldn't guarantee that I'd be well enough and there was also the chance the same thing as happened two weeks previously could happen again. I phoned them back and they told me my 2.30 client had been allocated another counsellor. That was hard to take but I had only just started with him and he'd been mucked about enough already so fair enough.

We had a chat about my other client at 12.30 and eventually decided the fairest thing was to allocate him another counsellor as well. I agreed to that, came off the phone and burst into tears. It just felt like everything I'd worked towards in the past year was being taken away from me in one fell swoop. However once I got over the upset I got on the pc and e-mailed one of the course tutors asking for advice as to options because I had a feeling you could defer for a year but after wading through the 82 pages of our Course Handbook I couldn't find any info on that.

My thinking is that something made me relapse so if I go right back to everything I was doing I'm pretty likely to get ill again. Even if it was the bugs coming one after the other (which it didn't feel like to me), something was also causing my immune system to be so low so something needs to change. But of course the second I start thinking like that, I begin to doubt myself and the wee voice starts up in my head "Are you taking the easy way out? Are you making excuses for not doing any hard work?" It's so frustrating. It's bad enough trying to get other people to believe this illness never mind when I start to doubt it myself!

I feel I'm so far behind with everything now that I'll probably make myself worse if I try and catch up. I've literally done an hour and a half of studying this year and it was estimated we needed to be doing around an average of 5 hours study a week for this course and I would say that was actually a fair estimation. I have an assignment to work on and resubmit, a life story to write and talk about in front of a group so need to look out photos etc. to show with it, I would need to do a mass of reading/studying for the lectures we've had since January and there's only a month before we have to hand in the next assignment due. And the one after that is due 6 weeks later! If I was in full health, and 'normal', I might have a crack at it but doing that in the state I'm in at the moment would be pretty nigh impossible.

Whereas if I started again in September, I wouldn't be starting completely from scratch, I would have a heads up as to what to expect, I could do some reading/studying in preparation over the summer, I would have all the books I need, I would be familiar with the online course info and materials, I could go to Study Skills classes run by the University to brush up on academic writing, referencing etc. and I could tap into the Disability Service and see what help they can offer me. And I'd therefore be far better prepared to start off again on the right foot.

I suppose there's still the risk of it all becoming too much again at some point and having another relapse and I would then have wasted a shedload of money and at least 2 years' time and effort. So I could just withdraw. But if you do that you then can't apply for another 3 years. And at this age that's quite a long time. I think I'd probably go off the boil if I waited that long.

I e-mailed one of the tutors yesterday asking for advice and she's got back to me today saying there is an option to defer and the Director is very proactive in trying to help each student get through the course with as much help as possible so that sounds quite positive. There's a formal process to go through but I think the first step is to go in for a chat to discuss all the options so we're just trying to arrange that. I think if I don't make it in this Wednesday coming, my decision will be made for me. I really can't miss any more days although you're allowed to miss 11 in the whole 2 years - it's more the fact that if I can't even manage to be there for a whole day or get there for 10 o'clock in the morning (the University is only about 20 minutes drive from the house) then there's something really wrong so there's no point in pushing myself any further.

There may be some way through the mire in a medical capacity. I already have a Medical Certificate from my doctor for 6 months which she printed off for the JobCentre who then e-mailed me to say it was no use because they only need one for 5 weeks or something. I've pleaded to keep my Jobseekers Allowance case open another week and have an appointment on Monday to see my work coach and I'm hoping I can then go home and apply for Employment Support Allowance which I think I can get for 6 months as long as I produce appropriate Medical Certificates. (The application has to be done by phone and it's a good 45 minute call so I need to steel myself for that!) But at least I have a Medical Certificate if one needs to be produced for the University.

Tomorrow I'm hoping to drive the car out to Ellon which is about 15 miles away to see Janice, my best friend. Before I became ill we had arranged to meet up tomorrow for a walk and tea at her house so I texted her to cancel yesterday. However she wanted to see me so I said I'll try driving out to hers in the afternoon for a cup of tea and if not she can come in to me instead. I've only had 5/10 minute drives in the car in the last 2 weeks so I'm really hoping I can do it - it was one reason I wanted to take it easy today.

Onward and upwards!