Moving forwards

Last week was quite a productive week, even if I had crashed quite badly after the Bank Holiday visit to Gressenhall. I managed to finish and post off my forms to the local M.E. clinic and arrange a telephone appointment with my G.P. about my anti-depressants. I've been on 40mg of citralopram for a few years now but over the last 6 months I've noticed that it hasn't been working as well as it was in the past. I finally got up the courage to ask to switch meds- friday the doctor prescribed me 50mg of Sertraline and on Saturday I did a straight switch from my old SSRI to the new one.

I had some quite bad side effects the first few days, my ME crash seemed to add to it as when I switched meds I had not quite recovered back to 'normal'. I spend the first five days feeling extremely tired, extremely dizzy and off-balance, had a fuzzy, heavy, cotton wool head with a nasty headache and felt a little sick. But the last day or two I seem to have gotten over that, I hope that that is all I have when it comes to withdrawal/side effects of this med change and I hope that this new med actually works and helps with my anxiety.

With the anxiety I also have an appointment in two weeks with the local mental health team for a face-to-face assessment to try and get more therapy and new therapy on the NHS rather than paying for it like I have been for the past year. I can no longer afford to pay for private so I hope that the NHS can do something for me, in one of their letters they mentioned two types of therapy that I hadn't done before and I'm willing to try most anything to try and control my emetophobia so that I can have some more of a life, a job, a relationship etc. Hopefully the meds will kick in and I can get some therapy started before winter comes and the utterly terrifying winter vomiting bug starts up again!

Gressenhall Rural Life Musuem

In August we visited a local museum twice, Gressenhall Rural Life Museum. This is one of my favourite local places to visit, so I was pretty happy to go twice. The first visit was early on in the month and it was quite a big thing as it was my mothers first day trip out after her last lot of bowel surgery (she had her stoma reversal about 6 weeks before hand but was suffering greatly since then with her bowel beginning to work again). Luckily Gressenhall is relatively close to home, only 10-15 minutes away from our house in the car and it is highly accessible with toilets and benches all other the site.

Stitching completed by an inmate in the workhouse.

Gressenhall Rural Life Museum started out as as poor house and the land was bought in 1776, in order to build the poor house, it was then transformed into a workhouse in 1834 under the Poor Law Amendment Act. If you are unsure about what a workhouse is, it was basically a parish run place where poor people could go for food and shelter, but it was made to be so horrible and unpleasant so that the poor people would avoid it unless it was absolutely necessary. In order to run the workhouse, men, women and children were seperated and they were made to work by breaking stones, pumping water, carting grave, oakum picking and domestic chores around the workhouse. In return the paupers got food, shelter, basic healthcare and education for the children. Gressenhall workhouse closed in 1948, and it was turned into an old peoples home, before being turned into a museum in 1976. For more information about the museum, click here

The Workhouse Laundry- Matrons washing machine

Sampler sent home from the front by a soldier ww2

The second visit we had to Gressenhall was on the bank holiday monday, when they were having their Village at War special event. Compared to our visit earlier on in the month it was absolutely heaving and very rainy and chilly, but we decided to go anyway. Unfortunately during this trip I forgot that I was unwell and joined in with the world war 2 dancing like I would have before I got ill, I did two slow dances and ended up feeling very tired and shaky and annoyed at myself. Unfortunately due to the rain a lot of the special things that were advertised for the event were cancelled such as the airplace fly over and a lot of the vintage cars weren't there. But we had a nice few hours there, before going home and spending a few hours under blankets with mugs of tea and watching Once Upon A Time.

In health news I found out that my original urine test... the dipstick gave a false positive and there actually wasn't any blood or raised sugar levels in my urine at all. So all that was for nothing, which is infuriating. But I got the forms from the local M.E. clinic so that's something positive :).

Hope everyone had a nice August :) 

Back and Forth Again

The last few weeks here have been a little hectic! Two weeks ago I had an appointment with my GP about my potential Chronic Fatigue Syndrome, my GP agreed that it was most probably that and agreed to refer me to the local M.E/CFS Clinic. A few days after that I got a phonecall from the receptionist at the surgery asking for a urine sample to be dropped off so that the referral can go ahead. One MONSTER of an IBS attack later I managed to finally drop the sample off, and like every other test I've had in the past 18 months assumed that it would come back clear.

The next day I had a rather hurried phone call from the receptionist telling me I had to come in that day for a blood test, so I walk on down to the doctors and found out that I had high levels of glucose in my urine sample as well as high levels of microscopic blood in there too. I had a whole load of blood tests down, 5 vials taken out of my arm and then I was told they would be back on Monday so I had an anxious weekend waiting for the test results. I rang on Monday and the results were back but no one had looked at them and so I rang again on Tuesday, where the results were in and my blood glucose levels were borderline so the doctor wanted me to go to the hospital for a fasting glucose blood test, which I booked for last Thursday.

I started to believe that I was actually diabetic and maybe I didn't have M.E. at all. Thursday I went to the hospital and got more blood taken, after which I did an unbelievable stupid thing, where I ate a raspberry muffin and an orange juice. An hour later, when I was in The Range, I started to feel so unwell- very sick, very dizzy, clammy, my heart was racing and I thought I was going to pass out. An anti-emetic, a drink of water and a sit down outside and I started to feel better, but I recovered properly after I ate something other that sugar as we stopped in for a burger at Mcdonalds for lunch.

This morning I called the doctors for the fasting glucose blood tests, and got told they came back normal. I asked if the doctor had left a message for me, but there was nothing. I asked for the GP to call me to discuss this, and he's going to call me Wednesday afternoon. But I was surprised that the doctor wasn't going to want to talk to me about it anyway. So even if my blood tests came back ok, the original urine sample wasn't good and doesn't suggest normal functioning.

To be honest, I'm a little disappointed that my final blood test came back normal; while being diabetic is horrible at least it's seen to be 'real', it's accepted and there is treatment for it. Unlike M.E/CFS where there still are many, many people who don't believe it exists and thinks that people are wanting to be sick or are just lazy. I'm feeling a bit adrift right now and unsure where to more forward.

Obsessions...

Some of my current obsessions

Milka:

This is probably one of my favourite chocolate bars; especially Happy Cow and it's recently been on offer at Morrisons half price a bar. I only let myself have it when it is on offer or I'd be the size of a house! I'm currently on my last bar *sobsob* and when thats finished I shall have to wait until it goes back on offer! 

Peppermint Tea:

I used to only drink this after dinner to help digestion, but I've recently started drinking it through out the day as well now and am really enjoying it. I often fall asleep randomly throughout the day and it is very sad to fall asleep and then wake up to a cold cup of tea. But with peppermint tea it tastes nice cold as well as hot! YAY! 

Drops Baby Merino:

This is possibly one of my favourite yarns ever. It's a four-ply fingering weight yarn, 100% merino wool but its extremely soft and knits up beautifully. I'm currently knitting a lacy cardigan in a turquoise-y blue and it's so nice to knit with and to wear. I'm very excited about finishing this and wearing it- I just hope I finish it while it's still warm enough to wear! I get my drops yarns from Wool Warehouse and they often have sales on drops yarns throughout the year, so the already reasonably priced drops yarns become even more reasonable! Wool Warehouse can be found here.  

Criminal Minds:

A friend of mine from Elevate recently recommended me this programme and as it's on netflix I decided to give it a go... I'm now on season 4 after about two weeks! It's a really amazing show, and fascinating to see the profilers, though I'm sure that normal FBI profilers do not get as involved in the crimes as this team does! My favourite characters are definitely Dr Spencer Reid and Penelope Garcia. I would highly recommend this show to anyone who enjoys crime tv shows :) 

Trip to Cromer

A few weeks ago I went along on an Elevate trip to Cromer Pier and the Henry Bloggs Musuem. It was a lovely day to be at the seaside- very nice especially as the day before and the day after it rained.

Cromer is a seaside town on the North Norfolk coast, famous for having the last pier show in the UKand it's crabs, Cromer Crabs are supposed to be some of the best in the country! When I was younger my cousins, my sister and I went crabbing at Cromer, though I can't remember how many we caught but we got a few- and then put them back when we were done! It's also the 2015 Pier of the Year.

After we had a little stroll around the pier and people had ice creams we went to the Henry Blogg Museum, a teeny tiny walk from the Pier. The Museum is named after Henry Blogg, who was a local Norfolk man who became a national hero and was the RNLI's most decorated lifeboatman and served on Cromer's lifeboats for 53 years. During this time, he helped to save 873 lives. For more information about Henry Blogg, click here  and for information about the Henry Blogg Museum, click here :)

Exam results....

Things haven't been so great these last few weeks- emotionally and physically and today I had yet another blow, which is not improving things for me at all.

Today I got my exam results for what I hoped would be my last module with the Open University towards my History degree. I did A327- Europe 1914-1989. This was a pretty intense course, with A LOT of reading and so much political and economic history (I should have known really... I'm not all that clever really...) and not enough of the history of that period that I was really interested in. There was a lot that I didn't know, especially the Russian history and I did come very interested in the last Tsars- I think most people have heard of the mysteries of Anastasia and all the people claiming to the best lost princess of Russia after the Tsar and his family were massacred by the Russian people.

I thought I had done reasonably well in the exam when I had finished it, and I made myself so, so unwell with all the revision and the exam itself. I think for the next three weeks after the exam I was dying a little- it was kinda scary. So I'm really disappointed with how badly I did in the exam and because of the way that the OU marks the modules my bad exam mark has dragged down the mark for the entire module down to Pass Grade 4. I really hope that this doesn't drag down my classification for my entire degree, I was working on a level to receive a 2:2 with al my health problems I've had throughout this course but I really don't want a third class degree! If it does then I shall do another module and hopefully do

Also I have recently started my next course to keep my brain active and to feel like I have done something productive with my time- a level 4 diploma in Forensic Psychology. Am currently in the midst of my first assignment- which was a very short research study into the Public Perceptions of Crime. I had to get 25 people to do my little study- boy was that hard to do! Now I just have to answer a few questions about research methods and then a short discussion on problems with my study and I can e-mail it off to my tutor. I hope to get this done by the end of the week.

I've been up to some craftyness recently; finished the Port Neuf cardigan and shall take a photo and do a short write-up when I can find the energy. Also dug out my cross-stitch I patterned with a program I bought off the Crafty TV shopping channel! It's of Lily and Baby Harry from HP, a picture I found on deviant art, put into the program and created a little kit. It's coming along now, but it's going to take a long time to finish as it's very detailed and intricate but hopefully it'll look good when it's done.

A-Z of some of my favourite things...

Cream coloured ponies and crisp apple strudel...

Or maybe not, but here's some of my favourite things. And I want to see yours!

A- Apple crumble and Amish fiction
B- blankets, books, and I suppose my sister Beth.
C- Cats! and cake
D-Documentaries! and Doctor Who.
E- Eeyore :)
F- films and tv shows- I know I watch far too much Tv.
G- Gardens- eventually I want to grow veggies and stuff.
H- Harry Potter and Hugs :)
I- Italian food!
J- jumpers- I can not get enough Jumpers in my wardrobe!
K-Knitting, something I taught myself after falling ill and dropping out of uni, before that all I could knit was a straight scarf.
L- Lemon- one of my favourite scents in the world!
N-Napping- almost essential now!
M-Migracool foredhead strips! These are just damn amazing!
O- Owls. One of my favourite creatures, especially the barn owl.
P- polka dots! I love anything with polka dots on!
Q- Quotations- I like to read quotations sometimes, especially from people in history.
R- Rain. I love the smell of the rain and watching it from inside! Reading :)
S- Singing, I am terrible at it, will not do it in public but around the house I'll belt out a song or two. Sometimes with actions!
T-A nice mug of tea!
U- Underwear- can't beat the feel of some comfy pants! UFO's, I find these so fascinating!
V- Visiting museums and stately homes- am a bit of a history geek.
W-Walking, one day I hope to be well enough to go and walk in the Lake District
X- xmas! I love christmas songs and christmas films and christmas decorations :D and X Files- I want to believe!
Y- Youtube! I love youtube, so many programmes and documentaries on there.
Z- Zoo, I love going to the zoo and seeing all the animals.

Knit one, Purl one, Drop one!

I've had a rather bad two weeks to be honest, and haven't managed to write anything for a while. I spent the last week worrying whether I was in a crash or if I had slipped backwards and was living with my new normal and I was rather scared that this might be true!

I was having problems with my heart, lots of rapid heart beats and pounding, complete with an odd feeling in my chest like a dragging sensation in my chest. This was really quite scary and unpleasant, and hopefully when I see the doctor (in 6 weeks wait for an appointment!) he'll be able to talk to me about that and maybe get some tests to check on it! I was also having huge problems with the stairs, and by the time I made it to the top, my heart would be going, my legs were shaky and I felt dizzy and lightheaded and needed to sit or lie down for a few minutes. This wasn't good as my bedroom is upstairs while the bathroom was down- and while during the day I was ok as I could just stay in the living room with my laptop and blanket, at night this wasn't great. I always have to pee in the night, like a lot and having to go up and down the stairs at night, when it's dark, I'm tired and sometimes not wearing my glasses and half asleep wasn't a pleasant sensation at all! I seem to be doing ok with the stairs now though thankfully, though if that happens again I might just give in and make a nest on the sofa in the living room for a while so I don't have to feel like that again! It was enough to make you feel a bit sicky- not something that a person with emetophobia needs in the middle of the night when they are trying to relax and fall asleep!

Apart from that I've not really done much these few days- I've been knitting a new sweater and have completed the body and working on the button bands and then I need to knit the sleeves and weave in the ends. I wanted to get all the finishing bits done before the sleeves because I hope that I might have enough yarn to make full length sleeves. The pattern is for 3/4 length sleeves but I'm not so keen on that and I can't remember if I bought extra yarn to make them full length or not! The sweater is the Pont Neuf Sweater pictured below. Link to my ravelry page is here.

I also finished the reading of my first module for my diploma in Forensic Psychology. This first module wasn't overly interesting, it was an introduction into the different research methods in psychology. I now have to do some activities for assessment and send them to my tutor. Luckily with this course I have no due dates for assessment so I can get this done as when I can without having to stress about it. As part of the course I have a year of tutor support but can pay for more if needs be, and the cost of that isn't so bad either. So I'm not going to stress about this at all, and hopefully this in the long-run will help me with my illnesses :)

How have you all been recently? Been doing anything creative?

Ax

Because sleeping is important when you are ill

With my conditions I sleep an awful lot... and I mean A LOT! If I don't set an alarm, I can sleep for a good 13-14 hours and still wake up tired. That's the bitch with these types of conditions, you can sleep and sleep and sleep and wake up feeling just as tired and feeling un-refreshed as I did when I went to bed in the first place. So to try and make my sleep as good as possible good pj's and bedding is important.

These are my new pj bottoms. I got them from Tesco's a week or two ago and this was my first wear. They are very comfortable! A light cotton trouser, with cuffed legs and covered in a really adorable wigwam pattern! I love pj bottoms with cuffs because they stay down your leg when you are asleep and tossing and turning in bed. When I wear my other pj bottoms, they ride up my leg and then I wake up feeling very uncomfortable and it can put too much pressure on my legs where the legs are bunched up. So legging-style pjs or cuffed bottoms are the best things in my mind to try and make my sleeping better. 

But even with all these things- comfortable pj's, light blankets and duvets to be able to chuck on and off if I get too hot or too cold, an open window so I get fresh air to try and stop headaches and stuffy noses- I still wake up exhausted most mornings. Some mornings I get surprised and wake up feeling reasonably ok, it hits two or three hours later, just when you've planned all the things you are going to do in the day where you are feeling fine and free. 

And so I end up napping in the day, adding more hours of sleep to the diary and more hours of sleep that is no refreshing at all. I think this is one of the more annoying and frustrating issues that I have to deal with day-on-day and something that I am sill learning to deal with.

Trip to Sandringham

Yesterday I had a lovely afternoon trip to Sandringham Estate with the M.E./CFS group I joined a few months ago, Elevate. Sandringham Estate is one of the Queen's many homes around the country, and is where Prince William and Kate are living with their babies.

As with the very nature of having M.E/CFS you don;t know how you are going to be on a certain day, and it turned out that a lot of people couldn't make it but in the end 6 or 7 of us ended up turning up. We all met up between 2 and 3 at the visitors centre and sat and chatted and had something to eat before going on a very slow wander through the woods. We had decided on doing the blue trail which was a mile long, but we think that we accidentally took a short cut and missed out half the trail- which was probably a good thing with a group such as us!. 

I got home at about 6 that evening and was exhausted! I managed to eat most of my dinner that mum had made but by 8.30 I was upstairs lying down in bed, unable to keep sat up and downstairs any longer. I only laid down for about an hour and felt so much better because of it. Until now, I haven't gone to lie down in bed to rest during the day as I was always told that that kind of behaviour was bad, especially for someone with mental health problems and could lead to staying in bed all day etc. But I am amazed at how quickly I felt a little better just by lying down flat. I had a documentary programme on my tablet playing, but wasn't watching it- I also suffer from tinnitus so I cannot stand silence- it's just so much louder! I've decided to try this out and do more activity, like do a 20 minute walk and then following that go lie down in bed for 20 minutes and compare to how I am normally after that kind of activity. I'm hoping that this will help me to do more.

Today I woke feeling not too bad, which was a nice surprise. I had a wierd headache that wasn't a headache and spent most of today wearing one of those migraine cold gel stripes and was very stiff and achey in my joints- especially my knees. Last night when I went to bed I had very cold, achey bones in my left leg that felt like my bones were made of ice- I've had these types of pains on and off since I was a teenager. Then I was told that they were just growing pains- I'm 26 now and since developing CFS I've got them more and more and much worse- I don't think that they are growing pains mr Doctor. I can normally ignore it during the day but at night when you are trying to sleep its a burning pain that is all you can focus on, luckily it appears paracetamol is enough to take the edge off to fall asleep! The worst thing today has been the trouble I've been having changing levels, like getting up from sitting down. This has taken a lot of preparation and time to do so, but once I'm up I'm normally not too bad, slow and stiff but able to make it to the bathroom, or to the kitchen or even up the stairs and back to my room with a little help of the walls to keep my balance. 

Hopefully this next week goes well as well. I'm hoping to get the letter from Hellesdon Hospital about the telephone assessment I did two weeks ago and a letter about my enrolment at UK Learning Colleges about my Forensic Psychology diploma I enrolled in after finishing what is hopefully my last course in my Open University History degree. :) 

feeling lonely, like a stranger.

Things haven't been great in my life for a number of years now. I have had anxiety issues since I was 14 and been in and out of therapy for those issues for a while. But it was really during my first year at Uni (where I went to study Psychology and Criminology) where things really came to a head and I was diagnosed with Obsessive Compulsive Disorder. I eventually dropped out a month into my second year and moved home because I just couldn't cope any more at uni.

My OCD got worse quickly, and soon I was unable to eat, drink or use the bathroom at home without great anxiety, panic attacks and tears. I spent most of my time this first year asleep or in bed reading as I saw no reason to get up because there was nothing for me to do and nothing that I could do. I eventually got diagnosed with Emetophobia as well as OCD, this is a phobia of vomiting. I know, I know, no one likes getting sick but this is more extreme. I avoid many situations in case I catch something, or someone there gets sick, It severely limits my life.

I've now been home, sometimes housebound through anxiety, for 6 years now. In and out of therapy as the NHS deems me worthy of another bout of therapy. I'm currently trying to get into a residential unit in Kent for my emetophobia and OCD, but people around me aren't positive that this will happen due to the funding issues. A week ago I had an assessment for an NHS psychiatrist, to see if they will help get me into this place or at least get some proper help- as I am currently seeing a private psychologist but I can only afford to see her once every two months or so which isn't as good as I want. Things are going very slowly.

Things have gotten worse as in the last year or so I have been feeling very unwell. I had numerous blood tests, trips to the hospital, MRI scans and X-rays and they found nothing apart from elevated inflammation markers in my blood. And so my doctor believes it is Chronic Fatigue Syndrome. I have not had an official diagnosis but that what he says it is. I now have to plan any activities I want to do- even making a meal or taking a shower or changing my bedsheets. My already very limited life is now even more limited. Whereas a year ago I would walk the ten minutes into town just to get a sandwich and my prescription I can not do that at all now, I'm afraid I'll get there and not be able to get home again. I have to take a walking stick with me when I do go out because of the shakeyness and dizziness I get when I walk. I'm stuck between getting more to help me get out and about and the fear of admitting I am this sick.

It's not all been bad, I have a great supportive family. I had read some amazing books, watched some amazing TV and taught myself to knit. I hope to have more fun experiences though, socially. I recently joined a local group for people with Chronic Fatigue Syndrome/M.E. and while I have only been to two sessions I am enjoying myself there and enjoying meeting some new people.

Here's to new experiences,
xx