Just Answer

On October 23, 2011, in M.E. diary, by Sally


I believe …..

On August 19, 2011, in M.E. diary, by Sally

I wrote this to a friend a month or so ago – they said they found it inspirational which was very flattering indeed and mighty praise for me. Also very humbling – i was just being me and going off on one ……. and then i forgot about it.  I just came upon it today and it crossed my mind to share it.  I hope you like it – its not necessarily ME related but i hope that in some way it might help someone else.

“I believe that positive attitude is just trusting your instincts and my instinct tells me all the time that things will get better. Its backed up by knowing that there have been worse times in my life and it has ALWAYS got better. You have to remember that nothing lasts for ever, not good things OR bad things. Life is organic and i guess that like plants you have to feed it to get the best out of it so if you put energy in and have belief, not necessarily in God but, in your version of God. I believe in ‘Spirit’ as in an energy that you cant see but you can feel and that can influence everything around you just by your positive thoughts and intent. If it helps to get your intent straight then write a list of what you want in your life* -it can be as general as health, wealth and happiness but it works better if you can be as specific and as detailed as possible because i find that ‘Spirit’ has a sense of humour and can also be exact in its translation. For instance – don’t wish to be with someone for the rest of your life (because they, or you, could end up crippled and you are the carer). Do wish for all the qualities that you would like in a partner and describe how your day to day life would be. Or work wise – don’t just wish for a job that earns you 100k it might take you away from family and friends and ruin your life. Do wish for a job that gives you enough money to pay bills with enough left over for all the things that enhance your life, that you look forward to doing every day, with colleagues who make each day easier and more fun etc etc etc.

I believe that ‘Spirit’ doesn’t hear ‘i don’t’ or ‘i do’ or ‘i want’ or ‘ i don’t want’. I believe that ‘Spirit’ only hears the actual subject of the statement. So if you are saying ‘i don’t want to be depressed’ all ‘Spirit’ is hearing is ‘depressed’ and that’s what you get. So if you say ‘i want to be happy’ all ‘Spirit’ hears is ‘happy’ and that’s what you get.”

*I wrote a list of traits i wanted in a new man after my last relationship ended. It was based on him being almost exactly opposite to the last one with a lot of additional qualities that id realised i wanted from a relationship because of the last one. I swear (on my life) that within 2 weeks of writing the list that person presented themselves to me and all but one of those things were granted. The missing trait i discovered a week ago and it was something that because i thought i knew this man i never expected from him. Life has a very strange way of turning out to be amazing!! The strangest thing about it all is that i put into action meeting up with someone id met 12 years before, just to say hi, whilst i was still in the last relationship. I didnt think for a moment he was anything like my list (which i hadnt written then anyway) and who i wasnt interested in romantically, and they turned out to be what i was asking for – even though id put this into action before i wrote my list or ended the last relationship. Maybe if i hadnt written the list ‘Spirit’ wouldnt have known that he was actually what i wanted and what would have been good for me? It may seem at first glance like a bit of an egotistical way of ‘being’ but we all have free will and, after a couple of days listening to him talk, it turned out that he was asking for exactly the same as i was asking for.

I could go on and on and on and on 🙂 its a subject that once you get me started on it (actually i think i started myself off this time didnt i?) i cant stop.

If you have any questions or arguments, for or against, what I’ve said or would like, or need, a personal pep talk then I’m the kiddy for the job – just ask and you wont be able to stop me.

http://www.facebook.com/SallyMarsden and add me as a friend xx


High Days and Holidays

On August 18, 2011, in M.E. diary, by Sally

Ive had two birthday parties (spoilt i know!) and a weeks holiday (well it was my birthday week) all in the last 12 days and I’m surprisingly well …. i won’t even say surprisingly well considering …….. just surprisingly well 🙂

I am kinda (in a good way) shocked (because it was only a couple of months ago that i felt so ill if i just got out of bed and walked down stairs) at how well my body has coped with it all but i think it is mostly that i had a LOT of help and support from my gorgeous man and the wonderful girl friends i went away with – they took all the stress out of it for me and i REALLY don’t know what I’ve ever done to deserve so much love and care and thoughtfulness and its not possible to express how grateful i am …. there have been people in my past who havent been so thoughtful and sweet to me since I’ve been ill and I’m still a bit surprised when, instead of nothing, i get love.

Esty, even though he had a chest infection and wasn’t feeling at all well, drove me to Cheltenham (and a second lovely little party) where we were leaving for Ibiza from the following day and then drove all the way back up there to bring me home after my holiday. The girls – Jay who ive known for 13 years and fell in love with when we both lived in Cornwall, Jays sister Lou who has the most chilled way of just ‘being’ and is SOO easy to be with (luckily as we shared a bed all week) and Jays daughter Ella who is 15, slim with masses of long blonde hair, utterly stunning and went brown in 3 seconds (not my first choice of beach holiday mate obviously lol) and has a (sometimes scarily) unerring knack of being able to see exactly how it is and tell you (especially scary if you’ve just messed up in some way) – found the villa, booked the plane tickets, sorted out luggage allowances, arranged hire car and told me they were doing all the driving and basically made sure that i didn’t have to worry (or more importantly get stressed) about a thing – all i had to do was find the money.

So, I sold my quad bike (i loved my quad!). I haven’t ridden it for 18 months, apart from around the field next to my house and it was worth the payback afterwards – the sense of freedom it gave me for 10 minutes was amazing, because i just did not have the strength or energy until very recently. After i took it for its last spin (or 5) round the field to say goodbye i was exhausted an hour afterwards (once the adrenalin had gone). It went to a very good home and i think it will be even better loved than it was with me.

The first two days there i was shattered, glands were up and i started to feel very slightly achy but i stayed in the Villa during the day and just read, rested and pottered so when we went out in the evening i was fine. Everything was so chilled, there was nothing that was stressful at all. The girls were all so easy to get along with – i can happily say that it was the most chilled holiday I’ve ever had! I loved almost every second of it!! The only real problem i had was my temperature control – its was haywire again. Once i got hot i just couldn’t cool down, even cold showers, fans on full blast, staying in the shade etc didn’t help  – i sweated (glowed?) and sweated and if i cooled down i did have a bit of a problem with getting warm again (that only happened one night coz it was really hot most of the time). I really don’t know what the answer is to that problem – i just didn’t go to the beach and when we were out made sure i stayed in the shade as much as i possibly could. I also had a couple of days with brain fog but as no one was pressing me for instant answers i don’t think anyone noticed. I slept fine – one day i slept most of the day and night but the rest of the time (still using Dosulepin) i had very restful sleep. Alcohol seemed to have a much greater affect on me than when im at home – no idea why that was but i stuck to having one drink (Mojitos yay! And i say one but there was certainly more than one shot in them) or water most of the time.

Now I’m home I’ve tried to take it easy and as i was on my own this afternoon i was supposed to be catching up with a bit of work that i got behind on before i went away BUT now ive stopped I’m shattered and my glands are massive (giving me a bit of ear ache they are so big) so i thought id just write this – its now taken 6 hours on and off which is ridiculous considering i feel so well ……. considering …….

So the holiday ….. i feel more relaxed because of it and the hangover of the previous few months stress has all gone. I feel lighter and after a good nights sleep I’m going to be back to 85 – 90% which is amazing since I’ve done so much in the past 2 weeks 🙂

I’m a very happy, VERY lucky girl!





Unconditional love v. stress

On July 19, 2011, in M.E. diary, by Sally

Ive met an extraordinary man! So why am i telling you?

Meeting ‘the man’ does, in part, explain why its been so long between posts but honestly…… I just haven’t known what to say. Day after day ive been asking myself how i feel and i couldn’t have told you. Now i want to try.

Happy certainly. Relaxed for the first time in months. Excited. Hopeful. This man took away all the stress, wouldn’t allow me to think about it, took visible, physical steps to banish it. Distracted me and wouldn’t let me dwell on it. Day by day has released me from it so that its echo can barely be heard. Does that all sound a bit poetical? Tough coz that’s how i feel 🙂

Love is whats done all this ……. and i don’t mean ‘falling in love’ (although that certainly might come into it in the future) but unconditional, freely given, love for another human being.

This is only one example of the small miracles i’ve been getting every day. Last night he told me he’d just let me talk all day because he thought i needed to (and I’m paraphrasing next not quoting coz i still find it hard to trawl through my brain sometimes) – he felt i hadn’t been allowed to talk for a very long time. ‘He felt’, he didn’t know, but i cant tell you the difference it made to me because no one said ‘Shush Sal!’ or asked me to ‘John Craven’ it (this may have been funny 7 years ago coz sometimes I’m not very good at telling stories and didn’t realise it was my undiagnosed ME that made me have to relate what happened sequentially and exactly because otherwise I wouldn’t be able to remember what i was saying but actually is just bl***dy rude) which eventually turned into plain ‘Shut up Sal!’ with eye rolling and made me have to ask ‘Can i just say something?’ (which i can see was equally annoying but what can you do?) if whatever i had to say was not related directly to them or what i was going to do for their benefit. OK, I’m exaggerating because if this person was in a good mood, which could be for a couple of weeks in a row sometimes (was that sarcasm?) i would lull myself into a false sense of security and talk if i needed too but (this is actually true) eventually it would become too much for him and then whatever i said would be wrong even if it was right (and fear not … i tested it on occasion because over 7 years of it you do have lucid gaps where you ask yourself if it can REALLY all be you).

I know now that I didn’t talk too much. I know now that i just said what needed to be said, what was funny, what would make me feel better to say, asked questions if i needed to know something, made statements if they needed to be made, said what needed to be said to make the other person feel better, showed i was happy, sad, excited, worried in words just like everyone else does.

Everyday now i hear words that sound the same but have the opposite intent and i realise just how wrong the last relationship was.

The point of this is that in hindsight i believe (i believe?!? I KNOW!!!) that the stress in that relationship caused my relapse and that the blessed loss of that relationship is the reason I’m feeling so much better and that i can actually feel myself again. If you regularly read my blog you might remember me saying that it wouldn’t be long but i didn’t think id have this much help and get to this point so fast. This is good for everyone around me – my children are different children, they are amazing anyway and have helped me so much but they are so happy that their mum is happy and well. My friends all think my new man is amazing and say they can now stop worrying about me because I’m back to myself – my voice sounds different, I’m relaxed, smiley, have energy and i love them so much for not giving up on me because i put them all through so much – i just couldn’t see what they ALL saw!

Its awful that we might have to live around loved ones who don’t believe in us (or our ME) but worse to know that the stress may exacerbate our ME and even be the cause. If you feel like this i hope your miracle is just around the corner. It took me 6 out of the 7 years we were together but eventually i got it!

I’m not saying my ME has gone all I’m saying is that I’m out of the relapse, working at 85% at the moment (which feels like 100% after so long) and that all it took was to get rid of the cause of the stress. If you care about yourself the only thing you can do is get rid of anything that causes you stress!!

I usually like to end up light but i cant seem to find the words today. If you need to/ want to talk you can find me on facebook www.facebook.com/SallyMarsden or comment here.

PS Unconditional love v. stress …………. and the winner is …….. love every time!!!!! Love … the undefeated heavy weight champion of the world 😉


40 Start learning to sing

On July 1, 2011, in 101 in 1001, by Sally

Number 40 on my list of 101 things to do in1001 days 🙂

Yesterday i had a singing lesson. How I came to find my teacher had a lovely bit of coincidence to it and it felt right.

I put a message out on facebook asking if anyone knew someone who did singing lessons. I had loads of lovely replies, some great advice, and some offers of free lessons and help. Then i had a private message from someone i didn’t know suggesting Jane Mckell. I typed her name into face book and got her wall ………. blown away to read her last status message: I have a one hour space for a private student (aged 7-90 yrs) for acting, singing or public speaking either working towards an exam or for fun: Tues @ 6.00 pm – hurry as they go quickly!

So, on the 28th June 2011 i had my first singing lesson! I was so nervous i was (id like to say glowing / perspiring but alas not) sweating (profusely) all the way through it. I really enjoyed warming up and doing a few exercises with Jane but was slightly confused by the song we decided to try me on first “It don’t mean a thing (if it ain’t got that swing)”. Its quite a fun song to sing but in my second lesson i realised that it was probably a bit hard for me as a complete beginner – i just didn’t understand the phrasing.

In my second lesson Jane suggested trying ‘Somewhere over the rainbow’. I LOVED singing this, its so much easier and Jane had the music for this song so it was a bit easier when i wasnt quite sure whethere the next note went up or down.

I love learning to sing! I’m amazed that after an hour or two of deciding i was going to do it after all  these years i had a lesson booked and next week will be my third lesson. I just have to get my confidence up (i tried faking it today and that really seemed to work). I really don’t want to go with an anxious feeling that i got again today 10 minutes before the lesson started.

So, Jane says i have perfect pitch (i think that’s what she said) and that she can tell i have ‘musicality’ by the way i move etc – i took that as a great compliment!! I really like my singing teacher, i look forward to seeing Jane as much as i look forward to the lesson.

I MUST PRACTISE – maybe i should put that on my 101 things in 1001 days list?



101 things to do in 1001 days

On June 29, 2011, in 101 in 1001, M.E. diary, by Sally

Ive started a list of 101 things to do in 1001 days – supported by this really great website: http://dayzeroproject.com/. The Day Zero Project was started in 2003 by a New Zealander called Michael Green.

Im going to:

A) Write a post whenever i manage to complete a task. The posts will be stored in the category ‘101 in 1001’ as a full record of my acheivments. In my life at the moment anything i do out of the norm is an amazing acheivement and will boost me, and my feeling of wellness and normality, and encourage me to get stronger and stronger metally and physically. Plus ….  when i look back at the end of it i’ll know that i didnt actually spend the whole time resting!!

B) Update the page, entitled ‘101 in 1001’, that contains my list whenever i complete a task. I completed my first one yesterday!!

If ive inspired you to start 101 things in 1001 days let me know by commenting at the bottom of this post and come back and let me know if you document it so that i can join in on your journey too. One of the trickiest things to do is find 101 things worth putting on the list!


Its been a while …

On June 24, 2011, in M.E. diary, by Sally

Its been a while since i wrote in my blog. Its been a while since feeling ‘as well as i can’ meant i felt like I’d found myself again. Its been a while since i felt safe and happy. Its been a while since i slept a whole night and didn’t wake up with that horrible butterfly anxious feeling. Its been a while since i ate properly. Its been a while since i didn’t have one horrible thought continually popping into my head all day long ………. and its that thought which caused all the previous.

So whats the good news and the bad news (coz i always have to find some good news to balance out the bad).

The good news is that it wasn’t my ME that was causing the thought (YAY!!!).

The bad news is that one of the people in my life who i trusted (really really wanted to be able to trust and should have been able to trust) let that thought niggle and fester away in my brain then made me feel as if my ME was causing it. No, worse, actually accused my ME of causing it!! They could have helped me at any point in the past 6 weeks. I asked for help over and over again. It was always turned round to my insecurities, my neediness, my ME, my illness, my past, my baggage, me, me, me and my ME. In hindsight i can see that there was a huge effort put in to make me feel better but just not by owning up and being honest. I did get lots of cuddles and kisses, and a few concessions but i needed words and this person couldn’t do that for me. They made me feel that the cuddles and kisses and the concessions were them being bountiful and patient with someone who had big problems. Five minutes of truthful words could have saved me (and them) so much pain and heartache.

Its great that i know the truth at last and that the truth isn’t quite as bad as my imagination had made it but its bad, trust me its bad.

Its made worse because someone i thought cared about me thought it was OK to lie to me, to ask me to trust them when my instincts said (screamed) DON’T! And  the very worst part of this is that my ME got the blame and there i was …… cast as a needy nutcase. In fact, in their mind, i probably still am.

It might be a while till i sleep properly again and don’t wake up with that horrible butterfly anxious feeling, it might be a while till i can eat properly again, it might be a while till i feel safe and happy again. It might even be a while till i find myself again but i was so close to getting me back that i don’t think I’ll have to wait long for me to re-appear. As im writing this i can feel my spirit lighting up again. Yay!! I’m coming back!!


List of ME symptoms 25.06.2011

On June 24, 2011, in M.E. diary, by Sally

This is more complete list of my symptoms that i generated on this website: Stonebird ME Symptoms Questionaire

Its quite scary that i have the majority of them to some degree or another AND i dont think thats a full list of my symptoms either.

NB: Since starting to take Dosulepin to help me sleep i have not suffered from Sleep Paralysis (which is a blessing coz i used to be scared to go to sleep some nights it was so bad)

Sally’s ME Symptoms:


Ive got ME but im never ill?

On June 8, 2011, in M.E. diary, by Sally

I found out something crazy today!!  And because i have been acting crazy for the past week, getting worse and worse as the days go on, and getting less and less sleep as the days go on, i may have to [i cant remember the word for what i will have to do but it will come back to me – it means alter to make it read right? Anyway I’ll add it later in capitals after this sentence if it does come back to me, its probably quite important to leave this bit in because its part of whats happening to me at the moment] EDIT  [ It came to me 6 paragraphs down] this post later when I’ve had some sleep. I have decided not to alter the post as its a true record if i don’t ‘edit’ it.

Anyway, i have often said that i don’t get colds, flu or any of the sickness things that go around and that my family and friends get. I’m never ill. I got/get the ME aches and tiredness for a day, go to bed and then id usually be right as rain by the next day (until i had the relapse in October 2009 when i thought i was going to die but that story has been told before).

For the past week, possibly 10 days, my sleep pattern has been getting worse and worse and my emotions have been getting more and more erratic (i cried for 4 hours at one point until my hands went tingly and at 3am i fell asleep). Ive been REALLY anxious, my heart has been pounding constantly (as with huge adrenalin rushes), I don’t feel hungry and for the last 2 days I’ve been looking in the fridge and been unable to work out how to make food so I’m not eating at all – which didn’t seem to matter because i wasn’t hungry anyway.

Ive driven Jon crazy too, keeping on and on about the same thing, niggling away at him – i don’t want to because when I’m well i couldn’t care less about the thing I’m going on about but the iller i get the worse i niggle. My brain wont let go of it though and for the last 2 days, to cut out the anxious feeling and the non stop washing machine brain, all I’ve done is play a computer game on my laptop with the TV on in the background so that my brain doesn’t have any blank corners that it can work away in (till 3am where i fall asleep exhausted only to wake again at 6am). Jon was going back to Ellesmere yesterday which always makes me a bit odd and even though i know I’m going to see him on the 18th which is only 10 days away that didnt seem to help. Everything is so lovely between us when im well but yesterday, after 2 days of me being tearful and ‘niggley’ (that’s a very nice way of putting it) he left really angry (hes fine again today and things are back to normal between us). He said i was acting as if i was on speed and that i wasn’t even breathing properly when i was talking. I guess that adrenaline is causing that?

Ive got a cold sore which came up 3 days ago and a few mouth ulcers. I get both those things when I’m run down and have done for years. I don’t seem to get ill in  the traditional way, snotty nose, sore throat, temperature etc but i do get ‘run down’? Ive just spotted that as i was writing.

I had to take a Valium yesterday to calm myself down (Jons suggestion i wouldn’t have thought of it myself) and did the same thing a few days ago. It does work but you cant do that every day, all day, just to feel normal. (EDIT!! Eureka!!)

I also have this thing that i don’t remember having before where i don’t feel attached to whats going on around me – everything is a bit fuzzy and blurry – its as if I’m fading out or something. I cant understand what people are saying and feel like i should grab hold of something to stop me falling/disappearing/floating off. I cant really explain it. Its a bit like brain fog but 10 times worse because everyone/thing else is covered in the fog including sound. A bit like swimming under water but not moving.

Michelle, my Occupational Therapist, came today and commented that today is the first time shes seen me looking unwell. I guess it must be the cold sore, white face with black circled swollen eyes. We sat outside on the bridge in the sun with the ducks and she filled me in (see below) on what is probably causing all the symptoms i have and said because i have a cold sore and mouth ulcers she thinks thats proof that what she says is correct. Apparently even chicken pox can show none of the normal symptoms in ME patients – not even the spots!

So one more lesson learnt – when i start feeling like this, for no real reason that i can see, its probably because i have a cold, flu or some type of virus and I’m just not exhibiting any symptoms. (This is all paraphrased by me and my ME brain so may not be medically exact.) My loss of appetite was because of hypothalamic dysfunction – the hypothalamus is what regulates your systems and when ME sufferers have underlying infections this will usually become unregulated. The first symptom of this is sleep becoming poor – emotions and sleep are closely tied. Next your appetite goes haywire – you can be hungry all the time or not hungry at all, temperature control is disrupted and your digestive system can have problems too. Your immune system is still doing its thing but you exhibit no symptoms – apart from the ME symptoms that you are probably familiar with. I told you it was crazy!!


Festival memories

On May 22, 2011, in M.E. diary, by Sally

We went to the Acoustic Festival of Britain yesterday. Bruce was playing there the day before (Friday) with a band called Travis and Julie from the States. Jon went as his roadie and they managed to get 3 free tickets from the owner and organiser (thank you very very much Mike) and hold onto the Artists Car Park badge so i wouldn’t have to walk miles. Well it was probably more to do with Bruce not wanting to walk miles but it was a blessing for me too.

We arrived at about 12.30 and i was so pleased to find a wonderfully small festival with a really nice friendly atmosphere. The calibre of artists for such a small venue was amazing! We saw Wishbone Ash, Fish, Nick Kershaw, John Parr, The Quireboys – one of whom Jon says was chatting me up while i was watching Rory McLeod – i’m sure he was just being friendly   … Hi, i was playing with the last band whats your name? Who knows! I dont think im chatupable any more. The toilets were fabulous too :-).

Jon stopped Rory McLeod as he passed us. What a lovely lovely man. He must be one of the most chilled, relaxed and nicest men ive met. You can tell, by just talking to him, that hes really spiritual and grounded and very positive. Id have to describe him as a very ‘shiny’ bright person and he left us all with a very good feeling. Some powerful positive energy coming from him – and what was so nice was he made Jon very happy. Jon says Rory has more rhythm in his body than any one hes ever seen. His performance later left both of us feeling thoroughly entertained and exuberantly joyful.

As soon as we got there i had flash backs to the beginning of Glastonbury (then known as Pilton Pop Festival by the villagers) although come to think of it Glastonbury probably always had more than 3,000 people walking through their gates after the first one – which, at the age of 11, i was lucky enough to have been at with my parents, my 9 year old sister and 2 year old brother.

We sat on a blanket right in the middle of the field in front of the stage and i can remember 4 things clearly – the compere was a guy called Mad Mick and he made an announcement that there were a lot of Hells Angels outside who didn’t have tickets or the money to come in but that in the spirit of the festival he was going to make a collection to pay for them all. Everyone put money in. I think the tickets were only a £1 (probably a lot of money back then) and they all came in and were so friendly, played games with us kids and everyone loved them.

I also remember Mad Mick announcing that Jimmy Hendrix had died and then i heard the most amazing sound ever – someone from one of the bands did a tribute to Hendrix. His guitar squealed and squeaked and roared and undulated – who knew a guitar could make those noises. They played some Hendrix tracks over the PA and i was doubly amazed.

The third thing i remember is huge inflatable toys – great sausage shapes and balls. Theres a clip of us sitting astride and bouncing on one of the sausage shapes that they show on the news every now and then when they report on Glastonbury.

And finally i remember falling in love with the lead singer of Tyrannosaurus Rex – a beautiful, tiny, perfectly formed, curly haired Marc Bolan. I know i was only 11 but the following year i fell in love with a guy who called himself David Jones and turned out to be David Bowie. He wore a long black cloak and all us children followed him around as if he was the pied piper.

I’m not sure if it was the first festival in 1970 or the second in 1971 when the Pink Fairies stole my mums car. They left it somewhere in Wales with a note saying sorry and some money for petrol. I had such a great childhood from a musical perspective!!!! One of my Claims to fame is that i once slept in the same bed as David Bowie – although luckily, because i was only 12,  it was a week after he had been in it. Another is that i once sat round a camp fire singing with Donovan and Joan Baez!! And i sat under the stage chatting and laughing with Rik Mayall while a band i really wanted to see (cant remember who now) was on just because I knew i was never going to have that chance again. Iwont drone on coz a actually have 100 other back stage stories that i could bore you with 😉

Anyway, after all that excitement I’m feeling really tired today, even though we got home at about 9ish, so I’m taking it easy but i don’t feel ill and there are no aches and pains, no headache (although no idea how i got away with it considering the amount of Old Rosie i put away) and I’m feeling a bit happier about my recovery today and was glad i tested it and  pushed myself a bit. Jon just ignored me last night when my brain started to unravel so we didn’t fall out. Its odd how badly alcohol affects the wiring of my brain – i do realise that i start to have bad reactions but only in, that old friend, hindsight because of course at the time its happening everything makes perfect sense to me!