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

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

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

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.

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.

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

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