ChronicallyMe

I spend a stupid amount of time window shopping on the internet (there has to be a new-fangled term for that …) taking ages to choose the right thing, then find the best price, then search for extra discounts. So I thought I’d share some of that with you just in case you haven’t got the same “free” time as me to hunt for the best price.

I have taken the plunge and ordered my first pair of Crocs.  Sigh.  This is either a huge fashion victim mistake or is going to make me a Croc addict if all the reviews of unrivalled comfort are proven.

SweetFeetShoes in the UK currently have a 15% summer sale and delivery is free.  

Crocs Cayman currently £24.61 -  bargain! And available in a huge range of colours. Discount is shown in your basket, so it’s 15% of the price shown.

The discount seems to apply to most styles of Crocs including Beach and Mary Janes. It’s the best UK deal I’ve found (17 May 2008).  They also stock Heralthy Back backpacks which are 15% off too.

www.sweetfeetshoes.co.uk

No, I’m not on commission - just sharing the fruits of my labour.

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

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.

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.

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!

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.