Bought a Stick

I bought a folding walking stick this week – mainly as an experiment to see if it would help with balance.  Um … it does.  Which is good news.

I use a reacher because my back is bad and it saves some energy from moving about to get stuff. I noticed that when I went upstairs with the reacher using it as stick for support seemed to help.  So that, combined with knowing Rachel had success using a stick, inspired me to try for myself. I bought a fairly cheap one (£9.32 plus VAT) but it’s pretty light yet sturdy and I’m rather pleased with it.

I am really surprised how much it helps – particularly as I am wiped out this week and really weary.  It’s not so much for supporting my weight as my arms are too weak for that, but I can see in a desperate situation (like when I had to stand at my friends funeral) it would be a help.  Mainly it’s great for balance.  I didn’t realise how much I cling onto furniture, walls and doors before we filled in the DLA claim form and I had to really think about it.  Using the stick is like having something to steady myself with that moves with me.

I also feel a lot better about the idea of being out in the wheelchair (say at the theatre in December to see the panto) and then walking to the toilet if I have a stick to get me from wheelchair to toilet. Not only will it help with balance but it’s sort of more acceptable to other people I think and will be a visible sign of the struggle I have moving about in those kind of busy social situations.

I never thought a stick would be worthwhile but I’m surprised to say it is.  Having practised indoors I’m going to get the courage up to use whilst out.  I even have my eye on a rather colourful and funky Switch Stick (I found the purple polka dot one on ebay cheap which I might bid on) for when I’m feeling loud and proud

Rest, Relaxation and a Whole Lot of Planning

Growler and I are off to the East coast of England for a week to get some rest and relaxation.  We’ve rented a little cottage (with no stairs – yeah!) 6 miles from the Norfolk coastline so we can hang out together (like we love to do) and have a change of scene.

I’m so looking forward to the break from routine.  It’s weird because you’d think being at home all day long, week in week out, isn’t something you need a holiday from.  It’s a bit different when you’re actually living it though. 

It’s also very important to me for Growler to have a break too.  To be away from work, daily chores and the day in day out routine.  He still needs to care for me and in fact being away from home can offer more challenges in this regard.  But I know we can have a treat or two and go out to eat meals which gives a little break from the shopping, cooking, thinking and washing up for him!

We also get to be distracted by visiting some places and hopefully just spending time together watching the world go by and not thinking about anything very much.

A holiday, even a short break not too far from home, is not an easy option when you have CFS/ME or care for someone with it.  It takes a lot of planning for us to make a holiday practical, as stress free as possible and to not make my condition worse.  We plan weeks, even months in advance. 

It starts with finding practical destinations and making sure travelling isn’t too long or too challenging – breaking it into chunks with stop overs if necessary.  Also considering the best accomodation – self catering is harder work for Growler but means there’s no pressure for me to up by a certain time.  Also we have the choice of going out to eat or being able to eat at “home” if I am too poorly.  Is there comfortable places to spend indoors if I am ill or the weather isn’t good?  Are there places we can drive for pleasure if I am too ill to do anymore than that?  Is there a restaraunt or even take away close to the accomodation?  Is the accomodation practical for moving around in?  Are there a lot of stairs?

Weeks in advance I am planning my energy conservation for the holiday.  We carefully schedule appointments, visits, even baths so that I have the best chance of making the journey with the least impact on my health.  I conciously conserve some energy in the week or two running up to the break in the hope I can have a little in reserve to go out places while we are away.  We ensure I am not coming back to any demands in the first few days to a week after our return in case the break and return journey have triggered a worsening of my condition. 

Up to a week before we go I start planning what clothes and other things I would like to take on the trip, making a list over the course of several days and getting advice from Growler about appropriate clothing (going out, weather, etc).

Two weeks before with Growlers help we try and calculate if I have (or will have by then) enough medication and suppliments for the break – and order repeat prescriptions or extra suppliments if needed.  I can’t just nip out and get things last minute so I need to plan everything and I need to allow plenty of time as I can only do so much organising in one day.  Plus if I have a poorly spell anything like this is often impossible, so I have to allow for that.

When it comes to packing we are very experienced.  Before I got ill we travelled a lot.  Well, I should say that Growler is experienced, as I have forgotten (thanks to CFS/ME) how easy it is.  I tend to get a bit stressed about packing nowadays.  I think I worry about being away from home and familiar surroundings and finding I am missing something important. (We went to France this year and I miscounted my medication and didn’t take enough with me.  We couldn’t get more without seeing a doctor even though in the UK you can buy it over the counter.)

So when it comes to actually packing Growler does all the work.  This is where my list is invaluable – because I know I’ve spent days going over it so it’s as complete as it can be.  I sit on the bed and read off my list directing Growler to where things might be, and he runs about scooping things up and settling them into the bag.  He gathers up medication, suppliments, chargers for phones and things, art supplies, clothes, shoes, coats, scarves, snacks and all those essential comforts. 

When we reach our destination he also unpacks the car and all the stuff from the bag – making sure I can get to things and re-assuring me.  The last thing I am able to do after a long journey is figure stuff out.  Gone are my days of running around a new room opening every drawer to see if any secrets or goodies where held therein!

This trip will be a car journey – in our own car.  It makes things much easier.  We’re comfortable and we can throw as much stuff in the back of the car as it can take.  Including wheelchair, hot water bottle, a snuggley blanket and golf clubs this trip!  I find a snuggley blanket can be useful for the car at this time of year as often my legs start to get quite cold sitting for a long while.  I also have sunglasses in the car as brightness even on autumn/winter days can be very trying and sometimes triggers a migraine.  So also having my eye mask (in case of emergency) is good.  I use Sea Bands for travel sickness – the elastic bands you put around your wrists with a dimple that hits an accupressure point for nausea.  They don’t look cool but neither does throwing up.

I find sometimes the noise of the car and the roads can be very trying – worse in wet weather as the sound of the whooshing wheels on the road.  So I have earplugs with me as a last resort.  Usually I can find some music to distract me.

I can’t help but get excited in the car at all the sights and views.   When you spend so much of your life in the same four walls the world suddenly seems a huge, amazing, beautiful place when you are let out!  When Growler took me out some months I ago to his parents, I even got excited about sitting in a traffic jam!  It can mean I chatter on a lot, especially at the start of the journey or when I start to get tired to keep myself going.  But talking a lot wears me out so sometimes Growelr has to remind me to shush for a bit.  I always have a bottle of water with me as I get dehydrated and when I talk I get a dry mouth really quickly.

It’s very important for Growler, and for me – that I can just plop myself in the car without having run myself ragged first.  So we try to arrange it so we don’t have to leave too early giving me time to wake normally and get ready without a rush.

That’s what’s happening this time around.  I’m having a leisurely morning, saving my energy for the car journey later on.  Aside from writing this epic post of course!

Overall a break is brilliant.  I have come back exhausted before now, but on other trips I’ve actually felt a lot better.  I’m hoping this time, especially now we’re getting so good at planning, it will be the latter.

So for now friends I’ll sign off and rest up for the trip.  Give the cat a fuss and tell him to be good for my brother this week and I’ll catch up with you all in a week or so.

DLA: Form Completed

Yeah! We finished the form for Disability Living Allowance (DLA).  All 40 plus pages of it!  Growler has been a star (as ever) – guiding me through all the questions, listening to me burble about relevant and not so relevant stuff and translating it into proper answers.

We ended up with around 20 attached typed sheets of A4 with additional info for questions and 7 supporting statement/letters from family and friends.  All attached with ribbon (aaah pretty).

It’s a bit of a monster thick form now but it’s done! 

Having to think about all I cannot do was, in fact, much easier than I thought it would be.  I have obviously accepted a lot more things than I previously thought. It helps (for purposes of form filling) that I have been consistently crappy for many months making me feel confident about how many days a week I need help with basic tasks like bathing, dressing and moving around.

Next step – we wait!  We wait while the DLA Decision Maker assesses my form.

DLA: Form Filling

It’s been over a month since I started my push for applying for Disability Living Allowance (DLA).  Since my first steps I’ve had a great response to request for help with supporting statements for my application.  I now have 6 letters/statements and Growlers will make 7!

Some struggled with knowing what to say or how to say it.  But I assured them to say it how they see it, say as much or as little as they were comfortable with and not worry about upsetting/offending me.  I had expected it might be tricky and a bit upsetting.  What I hadn’t expected was to feel touched by what they said.  Even though they were expressing difficulties I have and the impact that often has on them I felt a kind of unity and support in their words.  I feel almost like them being able to contribute to the process maybe helped them a little too?  It certainly liad some things out in the open and made me face that I’m not so good at hiding things as I’d like to think

Having completed parts one (personal info), two  (diagnosis, medications, disability aids) and three (walking outdoors) last week – today we started on probably the most difficult section.  Part four is all about care needs and help you require with washing, dressing, getting in and out of bed, toilet needs, moving indoors, getting in and out of chairs, eating, communication, help with medication and treatments, cooking a main meal, supervision required and hobbies/interests.  I don’t think they’re really interested in that last bit though.

We’ve made it half way through part four which is brilliant progress for me!  Growler has taken lots of notes to type up all the “see attached sheet” bits as the form is not designed to allow you to say as much as you need to in order to qualify.  It’s an infruriating form.

I would absolutely recommend that you don’t fill a DLA claim form out by yourself.  Enlist support!  Local Citizens Advice offices are very good apparently.  Also I cannot recommend strongly enough the guides from www.benefitsandwork.co.uk – it is well worth the £15 (I think) to subscribe.  But I’d still get someone to help you fill in the forms using the advice in the guide(s).

So it’s looking hopeful to complete the form by Friday – which was the deadline I set to have it done before we go on holiday for a week.  Then I can have a proper de-stress and not mither on to Growler

It’s eye opening.  I thought I would struggle to face how incapacited I am.  The bigger problem seems to be feeling worried about over-stating things.  Maybe that is part of not facing the incapacity!  Oh yer!  LOL. 

It’s easy when you adapt and live day in day out with limitations to see that as normal - because it is YOUR normal.  But compared to how I was, compared to you average Joe, it’s not normal.  Illustrating the severity leaves me mumbling “Yes, but … oh I suppose so .. oh yer you’re right …. oh.” 

Growler is doing a fabulous job of keeping things moving along however.  Thank you G

I have no idea if all of these efforts will be successful in terms of being awarded something for DLA.  I have no idea if my doctor will give a detailed, rousing supporting statement, or a quick sweep of the facts.  I have no idea if they will want me to be seen by one of their doctors to be cross examined.  I have no idea if they will turn me down, if an appeal will be neccessary, if sitting in front of a panel getting confused and tired and knackered will be required.  And if after all of that if I will still get turned down.  But I’m still going to try damn it!

Suppliments Which Might Be Helping Me

I’ve thought a few times it might be interesting or of interest to share what suppliments I take.

I’ve recently started a couple of new suppliments after recommendation by another CFS sufferer.  Although it’s still early days and I am sceptical, when I look back over the time I have been taking this it does seem to coincide with much better cogntive function.

However!  I am blogging with a note of caution because I am still not convinced. 

Also one of the things that drove me mad when I was first diagnosed was surfing web sites and finding sufferers recommending wonder suppliments or treatments – but who were still very incapacitated by this illness.

I used to think – what use it that?  How wonderful is product x or suppliment y when this person still is unable to do “normal” things?

I kind of understand now that just like the bad or better days you have with CFS/ME are often just tiny measures apart - I think so is the difference a suppliment might make.

I settled on a routine dose of immune specific multi-vitamin, zinc, magnesium, vitamin C and B12 a few months after my diagnosis.  I did quite a bit of reading and stopped taking others which I decided not to pursue for now.  It’s stacks up to quite a little monthly bill just for suppliments and it’s a lot of tablets to take. I found Dr Anne MacIntyre’s book “M.E.: Chronic Fatigue Syndrome – A Practical Guide” very helpful deciding on suppliments.

(Before you say – I know I should be trying to get these nutrients through my food but food and me have a complex relationship – so you just have to accept that for now it’s tablets for me).

I used to know why I took each of these – forgive me as today it escapes my mind!  I know my mulit-vitamin (Vitabiotics Immunance) has lots of brill things for my immune system.  Low levels of B12 in the body can cause fatigue so extra doesn’t hurt at all.  Vit C is good for immune system too I think. And I get them mixed up but I think Zinc is good to help you absorb nutrients properly and magensium is good for nausea and erm, other things. Somewhere I have my dosages written down if anyone is interested.

I went through a phase of thinking that they didn’t seem to be making much difference – I was still very ill.  So I stopped taking them.

Within a couple of weeks I had picked up a viral infection even though I had not left the house.  No-one else I came into contact with even noticed a viral infection in themselves – yet it left me shattered and very ill for over two months.

It was the first time I had anything like that since taking the suppliments.  Needless to say now I take them every day again!

So it seems to me at least that they are useful.  They might not make me well enough to zip around the house or go out on my own – but they certainly have a role to play in keeping my body as well as possible – using my energy to fight CFS/ME and not other infections.  It might be tiny compared to what I would have demanded before CFS/ME – but small mercies are welcome now.

I’ve been taking a product called AllicinMax (in the UK) or Allimax (in the rest of the world) which is 100% allicin extracted in a special process from garlic.  Allicin is the active part of garlic and when taken as garlic or garlic tablets it can be destroyed in the gut very easily.  The makers of AllicinMax/Allimax say that their allicin is stable and so you get the full benefits of it.

Briefly, allicin is supposed to be like a natural antibiotic except that it kills bacteria and viruses.  Each tablet contains 180mg of allicin (equalivalent to 30 bulbs of garlic!).  The theory is that CFS/ME has some basis in chronic infection.  That or bodies are riddled with chronic infection which are not killed by a routine course of anti-biotics.  The Marshall and Wheldon protocols are also based on treating chronic infection.  I have even heard the idea of “stealth infection” deep in our cells that normal medication cannot “see”.

Whether this is all true or not I do now know.  But I read on a forum about a lady who had been trying it and found (by accident really) that it seemed to be making her better – slowly but steadily better. 

I don’t really know why I decided to try it.  But it seemed not to expensive to give it a little go, it was simple and I didn’t need to believe in it – if it works it would just do it’s stuff.

I started taking one tablet a day in mid August 2007.  I have gradually increased the dose and am now up to 5 tablets a day.

I was not convinced it was having any effect.  I took 1, then 2 tablets through my viral infection and it didn’t seem to help with that.  So I was (am?) sceptical.

But looking back to August I see that now my brain fog is not as bad as it was.  I am able to concentrate more and get mixed up with words less.  I still suffer with bad brain fog but for less time if that makes sense.

Going out this week and feeling not wiped out completely – is making me wonder if the AllicinMax is indeed helping.  The lady who reported an improvement first said she started with better concentration and then slowly improved physically too.  Maybe my little extra battery space is due to this? Hmmm …

I’m not telling everyone to rush out and try it because I honestly don’t know if it worth it.  It could be just time and/or rest and/or pacing and/or one of those things that I have found small improvements.

If you do decide you are interested read up some more – a lot of people on my forum reported what are called Herx reactions.  So as the Allimax kills the bacteria you get a “die off” which is I suppose a bit toxic in your body.  So it can cause headaches and fatigue and basically make you feel worse for a little bit.  When the bad stuff stops them you know you can look to increase the dose.  This is why you don’t just start with a high dose of this suppliment – because the amount of die off would be too toxic for our CFS/ME bodies to handle.  I have increased my dose every two to three weeks – now increasing monthly as the dose gets bigger.  I personally haven’t noticed any such reactions but my symptoms are variable anyway so I might just be ignorant!

Oh very important – if you are in the UK make sure you buy AllicinMax (available from Boots and QuickVit) and not Allimax.  Allimax is a disupted name under copyright and the Allimax being sold in the UK do not contain pure allicin.  The company have renamed the pure allicin tablets to AllicinMax in the UK.  Everywhere else it remains as Allimix, but not in the UK.

Here’s a link to a web site that the lady who first told us on the forum about AllicinMax has set up www.cfs-allicin.com  It says a bit more than I have here and the community there would be a good place to ask questions about AllicinMax, the research and so forth.

Well anyway – so I have been on AllicinMax for around 3 months.  A week ago I also started taking N-Acetyl Cystein (NAC) 600mg an anti-oxidant to help clear up after the allicin. 

I also started taking Astragalus again which is supposed to be good for immune system.  I took this last summer when I was diagnosed with Glandular Fever and my progress was better then.  Whether it was the astragulus or because I am not more ill than then … I do not know!

I’m sorry this is a confusing post (see I said my brain fog was better not cured!).  I wanted to share what seems to be helping me but don’t want to sound like one of those people who says “this WILL make you feel better!!” because I really don’t know.  I’m not claiming a miracle or even a cure.  Just telling you what’s going on for me.

Sick Notes (UK)

I just wrote a response to a question on an ME forum about sick notes – but thought as it had my entire knowledge of sick notes I’d post it here too!  I’ve even added some additional bits.

My employer (and I think it’s a statutory thing so everyone is the same – but don’t quote me) allows you to “self certificate” for the first 8 days of sickness.  This includes weekend days during that period of sickness.  After this time if you are still ill you require a sick note from your GP.

Sick notes are a certificates whereby the doctor formally states that you should refrain from work and for how long as well the diagnosis of the disorder causing your abscence from work.  I seem to remember there’s a couple of kinds of notes but generally you get issued a Form Med 3.  At least that’s what it says at the bottom of most of my notes

On the back of the note you need to complete some details (name, address, national insurance number, works/employee number if applicable).

You can continue to have sick notes issued by your doctor for as long as your doctor agrees you should refrain from work. So in that sense you just keep asking for a new sick note when the current one runs out.

Your GP can’t put a future date on the sick note, but they can give you a backdated sick note. Make sure the sick notes cover you continously to avoid problems further down the line.

If you can keep a copy of the note before you send it to your employer/benefits office (I use a scanner and keep copies of my electronically on my computer as photocopy is not practical for me!).

If there is a gap in the sick notes (between the end of the last one and the start of the new one) contact your GP surgery and explain you need a note that covers the gap.

Often GP’s are usually happy to write sick notes without seeing you where the condition is “long term”.  Ring your surgery and ask about getting a repeat without an appointment (unless of course there’s things you want to discuss at the same time).  Some doctors may insist on seeing you.  As we know not all doctors are sympathetic about ME/CFS – if you have problems getting a note I can only think to try and see another doctor.

My GP surgery will also let you request a phone call from a doctor where you can have a quick discussion (ie. “there’s no change doc”) and they’ll look at your records and do the note for you there and then.

I started off with a 2 week note I think and then the GP suggested going for a month, then 2 months. If you realistically and honestly think it will be a while before you are well enough to work again then it makes it easier for your employer to plan knowing it’s going to be a bit more than 2 weeks. Plus if you feel better before the note is up you can see/speak to your GP and they will do you a return to work note which cancels it out.

(Speaking from personal experience I found it very hard to accept being signed off for a month and then for 2 months.  I’ve always been very conscientious and it was difficult to come to terms with the prospect of recovery taking so long.  But in the end it was useful both for starting to come to terms with the reality of my situation and for setting realistic expectations for my employer and in particular my colleagues.)

Sometimes a doctor will write an open note and sometimes they write the date you can return to work. If it’s an open note (eg. refrain from work for 2 weeks) then you must get a return to work note before you go back to work. If you’re not sure if you need one or not ring your surgery and ask.

A GP can write a note for a few days or for many months. I am currently having 3 month notes as I find it a useful excuse/reminder to see my GP every 3 months and have a little review of where things are at.

You will need to send the original sick note to your employer, until such time as they stop paying you and you have to make a benefits claim - in which case you need to send a copy to your employer and the original goes to the benefits people (I haven’t made a benefits claim yet so I don’t know about that bit). Hopefully it won’t come to that!

As for how long you can continue to be off work sick with a doctors note before losing money and so forth this varies from employer to employer.

Some will continue to pay full wages for many months while you are off sick. This is what they call an “occupational sick pay” scheme. Your employer voluntarily pays  your full wages. My employer gives 6 months full pay, then 6 months half pay , before going to nothing (and leaving me needing to claim benefits). They are public sector and it’s a good deal.  Part of my sick pay has been made up with Statutory Sick Pay but it all gets a bit complicated so don’task me to explain!

Other employers are not as good as mine! They will only pay Statutory Sick Pay so you will see a change in your income/wages almost immediately. Statutory Sick Pay (SSP) isn’t a lot (£72.55 as I type) - but it’s better than nothing!  SSP is paid by your employer for up to 28 weeks.

You’ll need to check your employers policy to see what they offer – give your HR people a ring or email if you’re unsure. There may also be rules about eligibility for Occupational Sick Pay (like how long you have worked there etc).

There’s also rules about eligibility for SSP.

More information about Statutory Sick Pay (SSP) can be found at:

http://www.dwp.gov.uk/lifeevent/benefits/statutory_sick_pay.asp 

Sick pay makes my head spin - but this blog post is about sick notes after all!
I hope some of this is useful to others.

So far I’ve had 18 months of experience with sick notes and signing back on to work and off again! It can be quite daunting when first have to deal with it.

Finally here’s what a sick note looks like  - with some blurring to protect the innocent.  It’s not that exciting – they could use a nice colourful border to cheer us sickies up.

And, yes, I know my sick note says “Post Viral Fatigue” but lets leave that for another blog post and think calm thoughts.

Example of a Sick Note:

Example of the Rear of Sick Note:

RELATED LINKS

When do I need a sick note?

http://www.nhs.uk/chq/Pages/1062.aspx?CategoryID=68&SubCategoryID=158
Advice on sick pay:

http://www.adviceguide.org.uk/index/life/employment/off_work_because_of_sickness.htm

 

Your sick pay rights:

http://www.direct.gov.uk/en/Employment/Employees/Pay/DG_10027238

 

 

PLEASE NOTE (Feb 2009):

This post was originally written in Sep 2007.

I’m not an expert.  I am no longer up to date with the provision of sick notes or sick pay.

Ring your GP surgery for advice on how to get a sick note.

If you need further advice on sick notes, sick pay or employment issues I recommend you contact your union (if you are a member) and/or contacting your local Citizen’s Advice Bureau.

Citizen’s Advice Bureau www.citizensadvice.org.uk