Friday, 16 May 2014

Appointments update (GI and dizziness)

Firstly, I'd like to take this opportunity to thank everyone who was supportive of my awareness attempts during ME Awareness Week, I'd also like to thank everyone else who did things to raise awareness and/or funds, and those who supported them- I couldn't be more grateful to you all! I hope you all enjoyed yourselves and aren't suffering too much for it! I was hoping to get another post or two out during awareness week, but it wasn't to be I'm afraid. Other people have done a fantastic job though so please do have a look around online and dig them out! The 3 lovely ladies featured in my 'favourite blogs' box on the right all wrote fantastic pieces for awareness so please do take a look.

I've had 2 appointments recently, so thought I'd share how they both went now things are a bit quieter.

GI appointment

This was GI appointment number 2, but with a new surgeon, this time discussing the whole gastro-intenstinal system rather than just stomach-up!

A while after checking in, I got called over for all the usual pre-clinic checks including blood pressure, heart rate and oxygen saturation- all fine. I was then weighed and measured- my BMI has improved- it's up 1.2 compared to at my lowest which is great. I then went back to the waiting room before being called through again, but this time it was to see the doctor. I was left in a room on my own waiting for the consultant- both GI clinics I've been to have done this and I find it very strange, particularly given the amount of medical equipment in there!

The consultant eventually came in. He was friendly and pleasant. He asked about my course and my circumstances, so I explained I was on medical leave etc. 

He asked about my weight, and I explained that it was increasing rather than decreasing and was much better than it had been. He seemed satisfied that it was therefore not a huge cause for concern.

We had a long chat about all my abdominal symptoms. I explained what had led to me being referred to him, and the investigations I've had done already. Basically, I had been advised by my upper GI surgeon to be referred again to have a colonoscopy if the results of the investigations he was ordering came back clear, and they did.

The (new) GI surgeon asked me what I thought would be found on a colonoscopy. I replied 'nothing'. We both agreed that my symptoms point markedly towards IBS. Also, were it an IBD, inflammatory markers in my blood would be raised and I know they aren't. He felt an IBD was unlikely and I don't fall into the age bracket where bowel cancer is a major concern.

He said a colonoscopy would be very unpleasant for me to go through because of my IBS, the prep is not easy, and it's not 100% safe. It is a safe and bearable procedure, don't get me wrong, but like all things there are risks. He said he'd hate to refer me and it cause complications, as I have enough to deal with as it is and he is confident it would come back clear so it wouldn't achieve anything. He asked me whether I was particularly keen to have it done, and I was perfectly happy not to go ahead given our discussions (and let's face it, who wants to go through a test like that!).

I was interested when he commented that Irritable Bowel Syndrome is not considered a diagnosis of exclusion- you don't diagnose it when other conditions aren't found; it's considered a clinical diagnosis that can be made based on symptom history alone. I realised IBS was often diagnosed and treated by GPs without invasive investigations being necessary, but I had never thought of it like this.

I then brought up the topic of gastroparesis (partial paralysis of the stomach) and whether that was an avenue worth exploring. He said it would certainly explain some of my symptoms, particularly my nausea, and it was perfectly possible that I might have delayed gastric emptying. He then went on to say, however, that there was only very basic equipment nearby, which would only enable a very basic gastric emptying study to be done and it would be best done further afield, maybe near Uni-home instead. He did say that it's questionable whether knowing I definitely had delayed gastric emptying would have an impact on my treatment anyway though, because there's little that can be done about it. So, I think that's something to think about, because there's no point having tests done for the sake of it, and I have tried drugs to increase gastric motility (and therefore speed up stomach emptying) in the past with no real success (although I think I had to stop them due to side effects), but an explanation could help with understanding and coming to terms with my symptoms... We'll see.

At one point he asked about CFS; whether it was different to ME, what I understood/had been told about my illness, and whether my GI problems were common with the condition. They're the sort of questions that are incredibly difficult to answer eloquently and fully when put on the spot with limited time, and few definitive answers available, but I hope I helped him understand a little, or at least sparked a bit of an interest and he may have gone away and looked into it a bit more. He seemed to be showing a genuine interest, which was nice!

I have obviously only outlined a lot of what we discussed, but there are details I'd rather keep private, for obvious reasons.

He said at the end that it had been interesting to meet me and he had learnt a lot. I think we both felt that although the appointment hadn't really achieved a lot in terms of arranging any further investigations or anything, it had been helpful in terms of discussing what the problem was, what it was unlikely to be and whether further investigations were therefore necessary. It was like an interesting, engaging chat about something I knew quite a bit about, but was keen to learn more, with a few slightly awkward moments discussing topics nobody likes to discuss!

It would seem that I now officially have IBS. It's not come as a huge surprise because I've had 'suspected IBS' for years and have been on medication for it for probably over a year now, but that's chronic illness diagnosis number 4 on the list I think. Asthma, Atypical facial pain, Chronic Fatigue Syndrome and now Irritable Bowel Syndrome.. Fun! AFP and IBS are both because of my CFS, and even my asthma has been worsened by it! Chronic illnesses certainly seem to breed.



Dizziness/faints appointment 

I got lost on the way the clinic (because it's a hospital where I always get lost, it's tradition), but had factored in time so still arrived early!

I was given questionnaires to fill in about different symptoms and limitations- some obviously relevant to dizziness, others slightly more abstract. I managed to work my way through the questions before my appointment time, although it was quite a task!

I then got called in by a nurse and had an ECG, and then I was fixed up to a different machine (with different electrodes typically!), a blood pressure monitor and something round my fingers. They took all the measurements lying down (the finger-thing makes it feel like your finger is throbbing) and then I was stood up for a couple of minutes while they took the measurements again (standing=ouch!). Being wired up to quite so much equipment and having to have so many electrodes stuck all over my chest felt a bit strange, but the nurses were lovely, and I was made to feel at ease throughout.

I was then taken round to the consultant. She was friendly and asked me questions about who I'd been referred by and why. She asked me about my CFS diagnosis, my dizziness and fainting, meds etc.

She explained that some CFS sufferers have problems with their autonomic nervous systems- normally POTS or Neurally Mediated Hypotension. She said that because my blood pressure is fairly low, she suspects I may have NMH. She said it's important to know because if I have NMH, there are medications that can treat it. The basic testing, however, had not given enough evidence to make a diagnosis. She said that she felt further testing was needed, so I'm going to have a Tilt Table Test. She said it would involve me standing for up to 40 minutes, but I would be supported, and they would put extra straps round my legs to take the physical stress off my legs. She asked whether the idea filled me with horror and I said it wouldn't be pleasant but I was happy to go ahead. She is therefore referring me across to the hospital where she will do the test.

I was advised to increase my fluid intake in the hope that that might help, as increasing fluids and salt can help to increase blood pressure and is often a management strategy with dysautonomias.

I'm hopeful the tilt test will show a treatable abnormality- it gives me hope that something can be done to improve things. It's weird when you're chronically ill like this, because you're already sick so you're just looking for ways in which things can be helped/treated, and diagnosis of specific problems is sometimes a way to get treatment, so it almost seems like a positive thing.

(Pictures from Chronic Illness Cat page on Facebook)

Monday, 12 May 2014

#ThisIsME blog chain

This Is M.E.

I am taking part in Louise Bibby's #ThisIsME blog chain, aiming to get the word out about ME, as May is ME/CFS Awareness month. You can find out more on her blog: GetUpAndGoGuru.com

As part of International ME/CFS/Fibromyalgia Awareness Day on May 12, I have made a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with CFS/ME. Have a read and see if there’s anything you didn’t know. Awareness Day is about creating awareness, so through these questions and answers, this is my way of creating a little more awareness about CFS/ME in my own personal network of friends and family. If you wish to pass this onto anyone, feel free to do so. It will create more awareness of this debilitating illness if you do. Thank you! 

What is your name & how long have you had ME/CFS?
I’m Jess and I’ve had CFS since September 2009 (just over 4.5 years) and have been diagnosed since March 2010.

Where do you live? (Country, State, City – however detailed you want)
I live in the UK

Age (if you’re willing to share)
22

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
1. I am a keen animal-lover. I have had many pets in the past including degus, guinea pigs, hermit crabs and hamsters
2. My dog is the centre of my universe! (OK, most people probably already knew this..)
3. I have a serious sweet-tooth. I love sweets and chocolate!
4. I have played multiple instruments over the years: oboe, piano, tenor saxophone and ukelele
5. I have lived in 4 different counties so have friends scattered across the country (particularly as many have moved for Uni/work too!)

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS/ME:
1. I never, ever get a break from my symptoms. They are constant and intrusive.
2. I am no longer able to look after myself- I would currently be incapable of living independently.
3. I found talking about my illness face-to-face *incredibly* difficult when I first got ill.
4. I still find the question "what's CFS?" very difficult to answer- there is no simple explanation, and it's easy to end up trivialising it by giving a poor response.
5. I still dread hospital appointments. I get at least a little bit nervous before each and every one.

What one thing do you think most people wouldn’t know about living with ME/CFS that you’d like them to know?
ME/CFS has a huge spectrum of severity. Some sufferers are paralysed, entirely bed-ridden and tube fed. Others live a fairly ordinary life and their illness has little impact on a day-to-day basis.

What is the most frustrating aspect for you of living with ME/CFS?
The limitations. Not being able to do what I want, when I want, and needing to spend so much time in bed. If I push my limits, I seriously pay for it.

Anything else you’d like to say before finishing?
A big thank you to everyone in my life that helps me through every day, particularly the difficult ones!

Contact details (if you want to give them) – blog, Twitter, FB etc
Blog: jesscfs.blogspot.com 
Twitter: @Jess_ME_CFS 
Facebook: fb.com/jesscfs 
Instagram: @Jess_ME_CFS

So There It Is … #ThisIsME #May12thBlogBomb



Info from Louise on joining in (for other sufferers):

I’d Love You To Join In!!

Please join in this simple, yet hopefully interesting awareness campaign. When you’ve finished your blog, post the link on your personal Facebook wall or email the link to family and friends. Or just post it on Twitter if you’re not feeling that game.

If there are any other bloggers who would like to add a list of participating bloggers on their website, please let me know. It’d be great to share the love.

And if there’s anyone who’s not a blogger but would like to participate, I’ll create a special page where I will post your “This is M.E” article. All you have to do is email a Word document to me at Louise@GetUpAndGoGuru.com and I’ll let you know when it’s up. Alternatively you could just post the questions on your Facebook page.


May 12th- International ME/CFS Awareness Day: Why does awareness matter?

It's International ME/CFS Awareness Day- May 12th; the day when everyone affected tries to get the word out about this illness, but why does awareness matter?

• Awareness matters because when I say I have CFS, more often than not, people don't know what it is or what it stands for.
• Awareness matters because, when I say I have Chronic Fatigue Syndrome, some people think I just get tired- there's so much more to it than that.
• Awareness matters because I have been asked several times whether CFS makes me fall asleep spontaneously- no, that's narcolepsy, CFS causes sleep disturbances, but normally in the form of insomnia.
• Awareness matters because some doctors end up asking me about my condition, and I end up educating them, instead of the other way round.
• Awareness matters because the world seems oblivious to the extent and severity of suffering caused by this illness.
• Awareness matters because those suffering most are unable to speak up themselves.
• Awareness matters because I want to say 'I have CFS' and get the same level of understanding that someone would get if they said 'I have MS'- the two conditions are very similar in a lot of ways, yet MS, and most other conditions, appear to be far better understood by the general public.
• Awareness matters because some sufferers are still receiving the wrong advice from doctors, which leads to worsening of their condition.
• Awareness matters because some patients are still going years without a diagnosis.
• Awareness matters because more research needs to be funded into the condition.
• Awareness matters because there is no real treatment, and certainly no cure.
• Awareness matters because so many thousands of people are living very limited lives as a result of this illness, and we deserve more.
• Awareness matters because there are people lying bed-ridden, scared, paralysed and tube-fed, and there's nothing doctors can do to make them better.
• Awareness matters, because there continue to be child protection cases brought against innocent parents withdrawing their children from harmful exercise programmes.
• Awareness matters because some sufferers continue to take their own lives because they cannot tolerate the suffering any longer.
• Awareness matters because this illness is destroying so many lives- so many hopes and dreams- and we want people to understand and help us to fight for a brighter future.

Imagine a world where everyone has heard of CFS. Imagine everyone knowing about and understanding all the biological abnormalities that have been found. Imagine important people taking interest in this well-known illness, and funding more research. Imagine this research finding an effective treatment, or even a cure. Imagine all those currently unable to walk or study or work being able to do these things again as a result. Imagine us all getting our lives back.

Awareness is the first step towards this dream coming true. Please, raise ME/CFS awareness in whatever way you can today!




Sunday, 11 May 2014

ME/CFS Awareness Week 2014

It's now ME/CFS Awareness Week!
Here is a new video I've just made (because I couldn't sleep.. as you do!):

:

Please also continue to watch and share my previous post/poem'video:

Or this awareness image from last year remains accurate:


As does last year's Awareness Day post:
http://jesscfs.blogspot.co.uk/2013/05/may-12th-mecfs-awareness-day.html

If there are any topics anyone would like me to cover, please let me know!
These, along with others' images/posts, will be shared on my facebook page (fb.com/jesscfs) over the next week so you can just click and share to spread awareness of this debilitating condition (please!)..
Thank you!




Thursday, 8 May 2014

ME Awareness Month poem 2014

My first ever YouTube video is now available online: https://www.youtube.com/watch?v=HtupctZ1AMY
It is my ME/CFS Awareness poem, a copy of which is below.

I'm far from a talented poet, I just got bored, so it seemed like a good idea in a moment of madness... Please do check out the info/links below it though! Anyway, here it is:

ME Awareness Month Poem

It's ME awareness month
but I don't know what to say.
My feeling and emotions
I want to keep at bay.
How can I raise money
or help people understand?
I sit here cursing my failing body,
typing with a painful hand.
My illness, you see,
has failed to give me a break
To think clearly
and plan the difference I could make.
That's the problem
with this cruel nasty illness,
It rids you of
your predictable-ness*.
But others have done
much better than me;
Some plan to make jam
others parties with tea,
Some will wear pyjamas
or turn themselves or buildings blue,
Many have written
a blog post or two,
Some are dressing
as princesses for the day.
Awareness and fundraising
In many a way!
I'm so thankful others
have spared their precious energy
To raise money and awareness
for people like me.
So what is my story?
Why does it matter to me?
I'll tell you a little,
and then maybe you'll see..
I'm stuck at the moment
out of education or work
And it's certainly not
because I want to shirk.
I'm desperate to return to uni
to complete the degree I deserve.
Suggestions that I'm lazy
really do hit a nerve!
Days spent in bed
achieving nothing at all
Make me feel useless,
make me feel small.
But what choice do I have
when doing anything more
Makes me unwell,
makes me unbelievably sore?
I never thought I'd get this ill,
that I'd struggle to walk.
My eyes sometimes well up
just at the thought.
What can I do
when answers are few and far between?
A proven cure
is yet to be seen.
We wait for research
to provide the solutions we crave.
But until then we suffer
we have to be brave!
There are so many stories
just like mine.
The strange thing is
we often look fine!
You could walk past someone
ill with CFS
And you really would
never even guess
That they're ill with a condition,
complex and misunderstood.
We hope by raising awareness,
it will do some good.
So please if you can,
donate money to our cause,
And to all those doing all you can
A round of applause!

(*I know that's not a word but predictability didn't rhyme.. Forgive me?!)

Fundraising/awareness-raising efforts mentioned:

Jamming in jim jams

Tea party online and off

The big sleep for ME

Light up buildings blue

Turn yourself blue

Blog posts
Many are taking part in Louise Bibby's #ThisIsME blog chain http://www.getupandgoguru.com/m-e-mecfsfibro-awareness-day-2014-blog-chain/

The princesses and ME

If any of the links don't work, please let me know!


Tuesday, 6 May 2014

PIP assessment

I have had my Personal Independence Payment assessment and I think it went well! Obviously I have no idea what the outcome will be yet, but I feel that they got a good understanding of my current difficulties. It now just depends which boxes they decide I fit into.. The purpose of this post is to hopefully help/reassure those currently awaiting a PIP assessment.

I won't give exact dates, but I initiated my claim early-November (telephone call) and returned my form early-December. I waited and waited and heard nothing (having been told I'd hear about an assessment within 20 days of sending my form- ha, yeah, no) so rang sometime in March and they said my application had been received, they had requested further information and I was on the waiting list for an assessment appointment; I was told I should hear in the next couple of weeks. I didn't. I eventually rang again (about 20 weeks after sending form) and was told there was a cancellation appointment available on Friday, and if I didn't take that it would probably still be quite a long time, so I took it. [I would advise others waiting for an appointment to ring and ask Atos/Capita whether there are cancellation slots available.]

While on the phone, I got authorisation to get taxis to and from my assessment as I didn't feel confident to travel to somewhere I'd never been before alone. She'd told me to bring 2 forms of ID and given me the address of the assessment centre over the phone, but I received a letter in the post confirming all the details.  So I arrived at the assessment centre no problem at all- had a lovely taxi driver who [showed me pictures of his dogs at the traffic lights and] took me to the building and pointed to the exact door I needed to go through. I assembled my scooter, got a receipt, and headed in.

A lovely lady on reception took my name and asked for my ID. She then asked whether I had any new medical evidence with me for her to photocopy- I passed her my pile of recently-received medical letters- and she told me to take a seat while she sorted the letters, and then said 'I can't believe I just said that' because I was sat on my scooter- lol.

I pulled across by the seats and she brought across the originals of my medical evidence. She then gave me the envelope and form to claim for my travel expenses.

There was one other disabled person (+ their accompanying person) in the waiting area who was taken in by a different assessor before me. The atmosphere was relaxed and non-intimidating. I felt quite at ease.

About 5-10 minutes after my appointment time I got called through. The assessor introduced herself and apologised that she would be typing and not looking at me a lot of the time, and for the amount of questions she was going to have to ask. She asked how I had got there (taxi), asked whether I had come alone (yes), asked whether the evidence that had just been photocopied was the same or different to the evidence I had sent to DWP (different) and asked about employment (student on medical leave- I explained about my deterioration and she asked which course I was studying and which year I had been in).

She then confirmed my diagnoses with me: Asthma, Chronic Fatigue Syndrome and Atypical Facial Pain. She asked whether my asthma contributed to any of my functional limitations and I said it didn't as my CFS has a far greater impact. We then moved onto my CFS and I was asked how long I have had it, so I explained that I got ill in September 2009 and was diagnosed March 2010, and she confirmed with me that I was on a number of medications due to my CFS- she checked that she had the copy of my repeat prescription and confirmed with me that I don't regularly take over the counter medications in addition to these. She then asked me about the symptoms I experience as a result of my AFP- I described my symptoms and she asked whether this condition is linked with my CFS- I said the facial pain is believed to be caused by my CFS, it gets worse if my CFS is worse, but also sometimes worsens randomly. I said that I take pregabalin for the facial pain, which gets rid of the constant headache, but I still get some random shocks of sharp pain.

She then asked whether any of my medications cause any particular side-effects; I said that my pregabalin worsens my tiredness, but had no significant side effects from anything else. She asked whether my medications help, and I said they do to some extent, but none of my symptoms are completely eradicated by them.

I was then asked what therapy/treatment etc I have had, so I explained that I have been under the CFS therapy team and received a lot of advice about energy management, pacing, improving sleep etc. I said that I was given 'exercises' (but explained that these were very gentle stretches) but have since been advised not to do these at the moment due to my low weight. I went on to say that I am under a dietician due to my low weight caused by nausea, so what I eat is very important. I also mentioned that I have regular reviews with my consultant.

She asked when I last saw my consultant, so I looked this up and told her. She asked how my most recent appointment went. I explained that my condition had deteriorated significantly since I had seen him the time before, and that he advised me to sit up regularly with my feet down to try to maintain my blood pressure and pulse reflexes (although I couldn't think of the word at the time) to prevent things worsening. I also said he had advised me to wear shoes around the house to try to keep my feet flat as my left foot is turning inwards. I mentioned that he'd also reviewed my medications.

She then discussed my living arrangements and my mobility with me. She asked whether I lived in a house/bungalow etc (house), how many bedrooms, who I lived with (parents), whether there were any aids/adaptations (I said I had a shower stool but no adaptations to house). She asked whether I used any aids to get around the house, to which I replied walls. She confirmed with me that I use my scooter when I go out. She asked whether I have difficulty getting around the house- I said that I have to limit the amount I walk around the house due to fatigue and pain, and my symptoms worsen if I overexert. We discussed the fact pain, fatigue, worsening of other symptoms (nausea, sleep disturbance etc), dizziness and difficulty with balance all affect my walking ability.

She asked whether there was anything I wanted to add, and whether I had any questions. I didn't have anything more to say, so she moved on to discuss my typical day.

She asked when I normally go to bed, when I normally fall asleep, why there is a very significant delay (sleep reversal and pain), and when I wake up/am woken up. I explained that my mum normally wakes me up when she brings me breakfast, and was asked whether I would sleep longer if not woken, I replied probably a bit.

She asked what happened next and I said I take my medications, so we then discussed whether I manage my own medications- I said that I do, but this can be a bit temperamental at times. I explained that I have a lot of alarms that go off to remind me to take my meds, but this is not always successful.

She asked whether I had any physical difficulties eating the breakfast my mum brings me. I said physically eating isn't really a problem, but I wouldn't particularly think to eat if it wasn't brought to me, and if it was something very chewy I might struggle due to fatigue.

We then discussed getting washed and dressed. I explained what I struggled with and what I can manage- she seemed to completely understand and was non-judgemental about my difficulties. We discussed the problems I have with bathing and showering and I explained washing my hair in particular was very difficult for me. I said that I had no difficulty reaching any areas of my body- it 'just' causes fatigue and pain. I also explained that the heat (and being upright, although sat down, in the shower) is a problem, and can cause me to become dizzy, so I rarely shower/bath with no-one else in the house. I was honest about how often I just have a wash instead and how often I get dressed.

We then discussed going to the toilet/continence etc, and I explained that the only difficulty I have is walking to the toilet when I'm feeling unwell, so I often have to wait if I'm not feeling up to walking to the bathroom. I admitted that this sometimes discourages me from drinking as much as I probably ought to.

At one point (I'm not sure when) she asked about hobbies- I said cuddling my dog :)

She then said she presumed I couldn't prepare a meal, I agreed, and she asked me for reasons why. (I think) I gave the following reasons: lack of mobility to get around the kitchen, difficulty lifting things, fatigue and pain, nausea being affected by cooking smells, and simply lacking the necessary energy (not sure whether I said anything else..).

She then asked about dealing with finances and bills. I said money automatically comes out of my account to pay for bills at Uni-home, but my flatmates have to remind me multiple times to tell them how much they owe me because I forget or don't have the energy or motivation to deal with it because of pain/fatigue/feeling unwell. She then asked about concentration/difficulty understanding. I said I'm absolutely fine with things like forms, but longer more complex things can be a challenge at times if I'm feeling very unwell.

That pretty much brought the questioning to an end, I think.

She then said that she would move onto the full-body physical assessment (because my problem isn't localised) but that it wouldn't count against me if I chose not to do anything, and was emphatic about the fact that I shouldn't do anything that increased my pain or discomfort, or would cause me difficulties due to fatigue.

She asked whether I was happy to go ahead with the physical assessment at all, again emphasising that it was my choice and she didn't want to cause me any harm, and I said that I would do what I can.

She said we'd start from the top and work down.

She asked me to move my head left to right, I did so, but explained that it caused some degree of pain in my neck at the extremes.
She then asked me to look up and down- no problems.
I was then asked to put my hands behind my head- definitely the most painful- I explained that lifting my arms was less of a problem than moving them backwards, and she asked where the pain was that it had caused (upper arms).
Next was grasping my hands behind my back- no problem.
I was then asked to raise my arms up in front of me and bend my hands up and down. I raised my arms very briefly but it was painful, I demonstrated that I could bend my wrists up and down without problems though.
I was asked to wiggle my fingers- easy.
Next she checked my grip strength and the strength of my grasp thumb to forefinger.
She then wondered whether to ask me to do anything with my legs, and decided to ask me to lock my knee out and bend my foot up and down- I tried the first leg but was fairly unsuccessful due to pain, probably partly due to the weight of my boots. I explained that this used to be one of my exercises which was stopped.
She then asked me whether my difficulties were due to pain or weakness or both- I confirmed both.

I was then asked whether I had any questions or anything to add, was told to keep DWP updated about any changes, and the assessor said she would refrain from giving a timescale for the result as it is unpredictable, said I've probably been waiting a long time already, and said to ring them up to hurry things along in a few weeks.

I thanked her, she opened the door for me to leave, made a comment about the fact I'd now be going home to crash after it all (wow, she understands!), and that was it! Assessment over! It wasn't too bad at all!

It's a weird experience in that you literally just discuss your limitations and what you can't do, so it ends up very skewed. In medical appointments, there's normally some advice which is positive, or you can discuss something that has improved/not worsened, whereas there's nothing to really make you feel better about things in the assessment. It didn't make me feel down- it was very matter of fact- I just felt very disabled!

I'm hoping I will get enhanced mobility as she didn't ask me to walk at all because she realised the impact it would have, but have no idea about care. Just a case of wait and see now!

I've been feeling very unwell recently, but I'm glad I went and got my PIP assessment out the way. I've got a couple of appointments in the next week, so will update about those when I can, and I'm trying (but struggling) to get post(s) together for ME awareness week which starts on Sunday, with international awareness day on Monday 12th May- I'll do what I can!

(Earlier post about disability benefits- benefit claimants are not scroungers: http://jesscfs.blogspot.com/2013/11/benefit-claimant-scrounger.html)