Things have been been going up and down and round and round recently. While things did improve once coming off the Sertraline and starting the Cymbalta for my OCD/Emetophobia, it hasn't improved all that much.
I'm still stupidly tired all the time, with pain most days of variable degrees but what have gotten a lot worse over the last 6 months is the light-headedness/dizzyness when upright, the breathless when moving and heart and chest pains. The doctor I saw at the M.E clinic back in Janurary said that I obviously had some form of Orthastic Tacycardia and wrote to my GP to get him to do some tests to discover what sort.
Last week I had an Active Stand Test at my surgery with one of the nurses. I was having a pretty bad time of it anyway and the test itself wasn't that great. From my reading I knew that during the test I was supposed to lie down flat for 10 minutes before standing very, very still for 10 minutes while my blood pressure and heart rate was taken at 2, 5 and 10 minutes. I don't think the nurse knew this. I only lay down for a few minutes, which wasn't long enough really for my heart to calm down from the walk from the waiting room to the office and then when I stood up, she took my heart rate and blood pressure straight away and then said, 'well it's not changed that much.'
I said to her that it was supposed to be taken repeatedly over the next 10 minutes, to which the nurse responded 'we can do that if you want to.'
If I'm honest I was not very impressed.
However, as I stood for the next few minutes and I started to feel worse and worse- clammy, dizzy and a little sicky- my heart rate went up and up. I had to call an end to the test half way through because I felt like I was going to pass out. I ended up spending the nest five minutes sat with my head between my legs (I know lying down is best- but I just can't lie down on the doctors floor!) until I felt a bit better.
My doctor called me this morning with the results of the test- congratulations it's POTS. Yet another chronic illness to add to my list. Ha! He is referring me to the cardiologists at the local hospital for treatment and management and in the meantime I am to drink water like I'm dying of thirst and he has prescribed me some compression stockings- which I am sure will be unbelievably sexy but hopefully will help with the standing up. I also recently bought a rollator, a walker on wheels with a seat so that when the fatigue allows I might be able to spend more time out of the house and able to shop and queue!
That is the plan anyway!
I am still waiting to hear back from Hellesdon after that assessment I had in January. I've called twice and been told that they would get back to me. Maybe they are thinking I will grow bored and suddenly 'TA-DA' I will be cured and better. But after having severe OCD/Emet for the last 7-8 years now I don't think that's going to happen.
Monday, 14 March 2016
Wednesday, 3 February 2016
It has been a long time since my last post, I have been having some bad ups and downs and health issues recently.
The main one is probably the switch in meds for my emetophobia and OCD. I'm on my third month with Sertraline and my third increase in dose- I'm now on 150mg a day and we are currently waiting to see if this is the golden dose. I'm hoping it is as 200mg a day is the maximum dose. My anxiety in the last few months has been awful- really, really high most of the time and then when something bad happens it seems to get impossibly higher still. My doctor is hopeful that this will be the dose and I'll start to feel some effect in a week or two. If nothing by the end of the box then we'll increase once more and hope that works or I'll have to start this all over again with another type of anti-depressant.
I've also been struggling with my M.E this last month or so, and struggling with my activities. I still can't get it into my head that everything is now classed as an activity and not just things like going out or cooking a big meal. Things like going to the bathroom, washing my hair and getting dressed are all activities too- as are nice things like knitting or watching TV. This seems to be an almost impossible task to comprehend and I hope that it suddenly sinks in one day. But I am trying to do more around the house- I got too scared to do anything extra really in case it made her more unwell. But in the last week or so I've been trying to do a bit around the house or to do something for someone else- even as its as small as making my mum a cup of tea. Mum's noticed I've seemed a bit brighter since doing that.
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This is how far I got writing this post back in November. It's now February. Sertraline is evil, that is a now a known fact. I got up to 200mg of it a day and all it did or me is make the chronic fatigue so bad that a lot of days all I managed to do is make some breakfast and go to the toilet. I went way too long between being able to wash myself and my hair and doing things like cooking dinner. I didn't leave the house for a month Dec-Jan. I went to my dads for a few hours on Boxing day and then didn't leave the house at all again until my first appointment with the ME clinic on the 26th Jan. I'm now off Sertraline completely and have started a new SNRI Cymbalta instead. This one is supposed to be really good for treatment resistant OCD as well as reducing pain an fatigue in people with ME/CFS and fibro so it's worth a try anyway.
I'll talk more about my first appointment with the ME/CFS clinic at a later date. And I had YET ANOTHER assessment at Hellesdon last week to try and get some treatment for my OCD and emet- I came away from that assessment very unsure how it all went. It was a lot of form filling-in and tick boxes and I'm not feeling very hopeful this time around.
The main one is probably the switch in meds for my emetophobia and OCD. I'm on my third month with Sertraline and my third increase in dose- I'm now on 150mg a day and we are currently waiting to see if this is the golden dose. I'm hoping it is as 200mg a day is the maximum dose. My anxiety in the last few months has been awful- really, really high most of the time and then when something bad happens it seems to get impossibly higher still. My doctor is hopeful that this will be the dose and I'll start to feel some effect in a week or two. If nothing by the end of the box then we'll increase once more and hope that works or I'll have to start this all over again with another type of anti-depressant.
I've also been struggling with my M.E this last month or so, and struggling with my activities. I still can't get it into my head that everything is now classed as an activity and not just things like going out or cooking a big meal. Things like going to the bathroom, washing my hair and getting dressed are all activities too- as are nice things like knitting or watching TV. This seems to be an almost impossible task to comprehend and I hope that it suddenly sinks in one day. But I am trying to do more around the house- I got too scared to do anything extra really in case it made her more unwell. But in the last week or so I've been trying to do a bit around the house or to do something for someone else- even as its as small as making my mum a cup of tea. Mum's noticed I've seemed a bit brighter since doing that.
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This is how far I got writing this post back in November. It's now February. Sertraline is evil, that is a now a known fact. I got up to 200mg of it a day and all it did or me is make the chronic fatigue so bad that a lot of days all I managed to do is make some breakfast and go to the toilet. I went way too long between being able to wash myself and my hair and doing things like cooking dinner. I didn't leave the house for a month Dec-Jan. I went to my dads for a few hours on Boxing day and then didn't leave the house at all again until my first appointment with the ME clinic on the 26th Jan. I'm now off Sertraline completely and have started a new SNRI Cymbalta instead. This one is supposed to be really good for treatment resistant OCD as well as reducing pain an fatigue in people with ME/CFS and fibro so it's worth a try anyway.
I'll talk more about my first appointment with the ME/CFS clinic at a later date. And I had YET ANOTHER assessment at Hellesdon last week to try and get some treatment for my OCD and emet- I came away from that assessment very unsure how it all went. It was a lot of form filling-in and tick boxes and I'm not feeling very hopeful this time around.
Friday, 11 September 2015
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!
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!
Wednesday, 2 September 2015
Gressenhall Rural Life Musuem
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| Stitching completed by an inmate in the workhouse. |
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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
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| The Workhouse Laundry- Matrons washing machine |
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| Sampler sent home from the front by a soldier ww2 |
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 :)
Monday, 10 August 2015
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.
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.
Friday, 24 July 2015
Obsessions...
Some of my current obsessions
Milka:
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!
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 :)
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. Friday, 17 July 2015
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.
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 :)
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