Thursday 30 April 2009

Emergencies- going out of your energy envelope

I am having to give support to my daughters partner as her mother had very suddenly become ill and is now receiving palliative care only. It has all been such a shock and the children need lots of support.

I am trying hard to support them while at the same time looking after my own needs and am finding reserves from somewhere but know I will eventually crash.

sometimes it is necessary for a special occasion or a time when others have greater need to deliberately go out of your energy requirements.

So if you know it is coming up have rests before and plan to have rests after. Rest as much as possible during and look after your own needs in order to look after others. A bit like putting your own mask on first before your child in an aeroplane.

Make sure you have plenty of medication including emergency supplies and anything else you use for pain relief. Drink plenty of water and eat enough snacks- now is not the time to watch your weight. Take your medication regularily set an alarm if necessary.

If others offer help take it whether other freinds or official support don't be afraid to ask.

Use whatever is there to get through it and when it is over give yourself praise for your efforts ans look after yourself and ask others to look after you too.

love and hugs

Tuesday 28 April 2009

Sleeping in a strange bed

It can be a problem whem you go and stay in hotel or on holiday getting comfortable in a srtrange bed and can increase your pain and make for a more painful day following. My Mum's spare bed was terrible so I sneaked out and bought a matress topper which has helped a bit. She has since bought a new bed and got a topper for it as well. I uased to dread visiting because it increased my pain for days after.
So what to do when sleeping in a different bed. You could take a mattress topper with you although it is a bBit bulky to take about with you. I I have recently bought a travel tempur mattress from ebay quite cheaply. If that is not an option I get whatever extra bedding is around blankets or spare quilts to pad the mattress ask for extra pillows and I always take a little heating pad to aid with pain relief. I bought a small electric one cheaply from Lidl or you can use microwavable one in case no electric available or a hot water bottle. I might also take extra medication pre-emptively so to speak to help alleviate the problem. At least you are aware of the problems of sleeping elsewhere now and can plan ahead next time. Maybe buy a topper to leave at your daughters if you will be staying there again. Hope this is of help kind regards Linda Ferriter

Sunday 26 April 2009

Blah Days

Today has been a bit of a blah day. Can't really explain why, woke up after really strange dream so was glad to wake up. It was a beautiful sunny day but just couldn't motivate myself to do anything. Sat in garden then summer house but just couldn't get comfortable felt vaguely uneasy all day and just blah.
Wanted to go out but just couldn't be bothered my DD went out and asked if I wanted anything and I asked her to bring me back the world.
She brought me back drumstick lollies as she said I was off to New York to play the drums- just go with this one, a hippo sweei because I had been on a safari, rainbow drops as I had been to the end of the rainbow. a girls magasine called bliss bcause that was how I would feel abd then a fab lolly because I am just fabulous- well you can imagine the tears were flowing from this and it was time to shake off this blah day. We read out silly things from the teen mag and I feel better now but glad this day is over.
How best to deal with one- go with it, maybe have bath and cry, do something nice for yourself, talk to yourself this day will pass and you have coped before and you will cope again. goodnight

Tuesday 21 April 2009

Dreaded DLA Form Part 2

Have had two reminders for this form and as my weekend wasn't so good health wise and also following a meeting with a medic on Thursday that didn't go to well , I thoguht it's time to give it another go.
Wasn't able to get up until 2pm today and that was only with Tom coming and saying come on Mum its a lovely day so up I got and made a good start on the form have completed lots of the pages now and need to just get it copied and send it off and hope for the best. I think my problem is that it can be so important- will they let me keep the mobility element or take it away or the care element and then if they do what do we do for transport?
But.. I need to just stop catastrophisng about it get it done in the post and forget about it.

I will feel very glad when it is don it just makes you feel so low when you have to keep thinking about how bad you are but having had to complete that other form for the pain consultant on the hop last Thursday I just thoguht if I can do that so quickly I can do this one as well. So although I really was distressed by that meeting it maybe has done me a favour because it has spurred me on to do this one.

Monday 20 April 2009

Talking to Medics 3 -It's All In Your Head Innit

It was with some trepidation that I attended a meeting with a new pain consultant now at St Thomas'. Arrived half hour early which was a blessing as I was confronted with an 8 page form to fill out with medical history how do you feel today how did you get it all that kind of stuff.
Luckily I had my trusty notebook as well as a printed medical history form- prepared by me- as well as a medical history report I had asked for from my GP.
It is so dperessing filling out these forms there is a picture of a body and you have to show where it hurts where it hurts the most, what makes it worse, what makes it better that kind of thing.
Wsn't it good I was early receptioinst said it should have benn sent to me and Iwasn't allowed to go in until I had filled it in. Consultants are Gods you know.

Well I did feel a bit low having written all this depressing stuff cos normally I keep my pain somewhere over my right shoulder so all this writng about it flooded it back into me poor body so was feeling bit tearful and then was called ito yer man.

To say that we didn't take to each other was an understatement he started asking me about acupan- which I don't take anymore- he was looking it up in a medical dictionary. When I tried to tell him about it he did the classic talk to the hand thing that I would bash my kids for if they did it to me and said"I can't listen and read". Why ask a question then??
He then started asking me what I knew about fibro and what trauma had I had in the past that might have caused it because it must have benn something because it is pyschosomatic you know. (Insert Scream Here)
Well feelin fragile I started to cry and he said I will stop asking questions but the psychologists on the course won't. He also claimed he had never heard of Prof Davies why was he doing fivbromyalgia when he was a sports specialist- what people with fibro would be doing sports??
I wonder does Prof Davies know he is referring his patients to a fellow specialist who doesn't think much of him and also thinks that fibro will go away if you get rid of all your demons from the past.
Thankfully he informed me he is not part of the team running the course as frankly I would not go on it in a million years if I thought he was.
Now what to do about this should I complain about him, talk to fibro support group at hospital or maybe my arthritis group of ladies or maybe everyone. Have been left pretty shaken by this and had to have a good cry when I came out which was bit odd for the poor lady taking pictures from the top of a London Sightseeing Bus.
At least it has left me in the right frame of mind to tackle the disability form. Have another meeting about the course next Friday which incidentally is four weeks and not the two weeks i was told it was by the fibro consultant.

Friday 10 April 2009

CFIDS onlibe support topic- fibrofog

Our topic for this month is fibrofog or cognitive disfunction. Although I have also seen it recently called being thought disordered.

I used to be very nuch bothered by this, that is to say I still get the brainfog but try not to get so stressed any more about it.
In the past I have found myself struck completely dumb when I had a meeting with a recalcitrant consultant and coulod not speak at all as he was so imtimidating. The end result was that he sent me for the test that I was hoping for so no harm done except to increase my awareness of the problems it can cause. I now take to any consultation or meeting notes about my medical history including family history, any medication I am taking, last weeks diary as well as the questions I want to be answered. If I am feeling particularly vulnerable I would take someone else with me.

When I was having many stressful meetings regarding my work complaint I used to have written in my notebook the following: I need a break
I need time to answer
Stop and wait please for me to order my thoughts
I would then point to the relevant statement for my union rep to say. It worked well for me at te time to feel that I had some control over the situation.
I have now become the notebook queen and always carry a pretty notebook to help me keep track of what Iam doing my goals and targets. I also use my mobile phone as a notebook and either create a note to myself, use the calender to set reminders for myself or make a text in draft form for something I have to remember.
Despite this I have still missed a hydrotherapy apointment this week and rang to apologise on Wednesday am for missing the apponitment that morning but it was actually Tuesday morning.
I also find it very worrying when people tell me I have said things without realising it such as saying in a shop that I had a "sexual problem" when I mean't to say I had a medical problem to try to explain my getting mixed up. So although it is funny now it is worrying and makes me feel I lack control. Will end now as worrying am getting too long thanks
Here is an article written by Bruce Campbell about this subject:
http://www.cfidsselfhelp.org/library/lifting-fog-treating-cognitive-problems

Wednesday 8 April 2009

Invading my Sanctuary Help Mouse!!!

I have been very tired since coming back from my Turkish trip mainly to buy furniture for our house. It was extremely busy and because there was a time frame to work too I had not much choice but to go outside of my energy envelope.
I am horrified to find on my return a mouse living in our bedroom that my husband has been chasing around the room every night since. I feel so tired I find it almost impossible to keep my eyes open even during the day and my pain levels are sky high. I am finding it very hard not to be really grumpy all the time but the worst thing for me is that I want to withdraw to my sanctuary- my bedroom- but feel that it has been invaded by this unwanted albeit tiny visitor.

Its interesting to me how important it is to have a place where I can feel as comfortable as pssible when the day is not going well becasue of pain and tiredness and you jusy want to be alone.
I have bought some different traps and have been forced to have massive tidy up of bedroom which on a plus side is nice that it is tidier but not so good that I feel even more tired from the exertion of it all. will let you know when my visitor has gone and I do hope it not a family of mice help

Friday 3 April 2009

Letter To Normals -I'm not sure about it?

When I was first diagnosed with fibro I think I quite liked this letter.
I wanted to make the world and everyone I met understand what it was like for me, how much I was suffering, how bad I felt. But now I think I don't really care what others think other than those that are close to me.
If friends are lost then how good a friend were they in the first place?
If people think I look good or I am getting better then does it really matter?
Those close to you want you to be well and happy does it help in any way if they truly know what your life is like?
I don't like to talk to about myself as someone who is suffering who has demons I don't think of it as helpful self talk.

I think I prefer the spoon story but I reproduce it here for you to decide for yourself, some of it is good but I don't know what do you think?
Maybe the thing is to use it to start one of your own.

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed.
And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless.
My pain works silently, stealing my joy and replacing it with tears.
On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating.
And in many ways my pain may be more destructive because people can’t see it and do not understand.... Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you.
My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy.
I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled.
When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something.
Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal.
Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn.
Please try to understand…. Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably.
I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week.
I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably.
And there are those who say “but you did that yesterday!” “What is your problem today?”
The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit.
I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask?
I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways.
Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different.
I too have hopes, dreams, goals… and this demon….
Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees?
I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that.
But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.
Please understand…. Thank you for spending your time with me today. I hope we can work through this thing, you and I.
Please understand that I am just like you… Please understand….
Copyright of www.fibrohugs.com Written by Ronald J. Waller

Wednesday 1 April 2009

Gadget Babe

I do really love a gadget my favourite one being my ipod but I like to find other things not as expensive to make my life easier and more interesting or just for fun.
Here's my list of top gadgets:
Ipod Touch- not only can you listen to music and podcasts, I have talking books meditations, films and games on it. hours of fun and distraction. Am completely addicted to bejewelled an application to add onto the ipod.

Nintendo DS- I don't play on this so much now becuase of the games you can put on the ipod but like 42 card games for solitaire games and Professsor Leyton puzzle games as well as brain training- goota keep the brain working somehow.

Nintendo Wii trainer- Ok the only one I am top at is the sitting down meditating but it does get you moving in a fun way although cannot master ski action and watching other people try to hula hoop is a just hilarious for some reason.

Remedi Pain Relieving Device- like a TENS machine but more powerful and you place the pads on your spine to block the pain signals to the brain. I don't find it works so well for pain above the neck but it does take the edge off the pain and the Remedi Company are always extremely helpful with repalcements or repairs in fact I now have a spare one that I was able to purchase at a cheaper price.

Tempur cushion- this is a very soft cushion that I made a bag for so I look like I am just carrying around a bag which I then sit on. Very useful to increase your confort in restaurants, pubs so you can stay longer only criticism is it is a bit heavy so I had to make a more manly bag for it ie brown instead of orange flowers so that my hubby will carry it for me.

First Class Sleeper- this is an inflable cushion that goes behind you to increase the comfort while on an aeroplane. It was invented by an airline pilot and makes airplane seats and other seats much more comfortable by giving more support behing your back and neck.

Electic Heating Pad- bought this for about £10 in Lidl but they are about £20 lovely to give heat where there is pain or just to warm up the bed. I keep one upstairs and one downstairs. Blissful heat.

Wheat or Rice Pack- Have made several of these using a tube of material half fill with rice and add some dried lavender. If you don't know how to use them they just go in the microwave for two minutes and are lovely and warming for pain. I particularily like them for facial pain as they can be held around the face for good pain relief.

Multi-adaptor- when I go away anywhere I take an adaptor with me as I have so many gadgets to plug in and you never know how many sockets will be in your accomodation whever staying with relatives or hotel.

Woollen wrap or cardi- have a lovely woolie wrap that can make sure you keep warm I find can get increased pain levels if get suddenly cold or also double up as a pillow or cushion. Its all about comfort.