Macca

Sandi, that's much more you - you've already started to think about the bigger picture - whilst paycheques are important, the rewards in life aren't all wrapped up in them, there are, as you point out, other important aspects too. Thanks for all the support you have given me and the others Sandi - just don't forget to look after yourself. You are important too!!!!!!!!!!!!!!!!!!!! Macca

Sandi, Glad you've perked up a bit - that's more like you!! However, you said you are not being realistic and your perception of your capabilities is in question. Your perception of our capabilities is spot on and your ability to see us close up from so far away is really remarkable. Once you take the emotional baggage away - and I know that's hard when you are so closely involved in your own situations - perhaps an external view of your situation is needed to get an accurate reflection. Perhaps some 360 degree feedeback from your husband or best friend would be good for you. I feel so sad that I don't understand your problem well enough to give a concrete opinion but your advice to us is always good, sound, rational stuff. Maybe you are looking too hard - why look for the wood when the tree may be right under your nose. just take a small step back and re-evaluate, but do it when you are calm!! Three cheers for Sandi - hip hip - hooray - hip hip- hooray hip hip - hooray!! Get your boxing gloves on Sandi and come out fighting!! Atta girl!! Best wishes Macca

I just read that phrase again - maybe we should chew it up and spit it out and say we should define the work that we do. Does that make sense? Do we need to do more to regain control and think things through from the opposite perspective? Sorry if you think I'm rambling but it didn't sit well with me that we were letting an external force ie work, define who we are and what we are about. I'm not saying I'm right by any means, but it's worth thinking about.------------------isn't it? Over to you guys. Macca

Sandi, I read this and struggled to believe it was you. This is not the positive person I know. Are you run down? Are these inconsiderate sops getting to you? Or maybe we underestimate them. Have they suddenly realised you were overloaded and they may have contributed to your illness? Have they realised you need help to function properly? Maybe with two of you at the helm, the job will be done better and more efficiently and result in increased productivity? Sandi, don't let these guys get you down - we need you at your ebullient best. Tomorrow is another day - get some rest. Tomorrow, these guys may still look evil, but they will be smaller somehow because you will be in a better place to deal with them. Perhaps if there are unanswered questions, you need to ask them even though you know you might not like the answers - but at least you will know where you stand. It's the not knowing that's damaging you at the moment. Wait though until you are in a calm and rational mood where you are as cold and calculating as they are - if you shoot your lips, you will make mistakes and say something you regret later. Be decisive Sandi, but do it when you are up for it, not before! Sandi, you are a hero - sorry heroine - be sure of yourself, you are a great person, worthy of great respect and its time they knew that as well as you do!! Give 'em hell if you need to, heaven knows that may make you feel better in itself but above all, maintain your dignity and self respect Here's wishing you the best Sandi, have a nice glass of wine or two tonight, put those losers out of your head for the night and boogie - did I just say boogie - how old am I? Ryan, thanks for your support for Sandi also - perhaps you need to ask questions too - to remove the doubts!! Macca

You see David? When you call there are so many life jackets come your way, you can't be in trouble. We won't let you be. There are so many great, and I mean great, people on here. You might need to make some adjustments but that's all they are and when you make them you will wonder why you didn't make them before. I too was worried about you my friend - I'm sure you will have a much better day today Enjoy - the sun is shining inside you to today as well as on the outside best wishes to all especially those of you who took the time out to help David on this thread Macca

David, having just read what some of the others have written, I think crying and getting your true feelings out, not bottling them all in is actually a sign of strength, not weakness and Sandi's thread on going back to work has some great stuff on it - well worth a read. If that's not enough come back to me and I'll see if I can help some more - the only daft question is the one you don't ask! What touches one touches all. Good luck David On the Winb front, and joking apart, Smokey Robinson's 'Tears of a Clown' seems appropriate right now - I know you are hurting and we are hurting with you - keep in touch, we're right here and right with you!! Am I getting to sound like Dr Phil? Macca

David, I feel for you right now. I made a reply on another thread this morning - I can't remember which one now but I've just been off for five weeks and I go back to work next Monday and I'm dreading it. They'll all think I'm ok and when I tell them I'm not they'll be sympathetic in words but their faces will tell a different story. They'll be etched in disbelief and think I'm kidding. I'm not getting better yet I can't stay off for another ten weeks until my next tests are done. I cried last night when the enormity of what the doctor had done in signing me to go back to work had done. My head isn't ready for it yet and the outside world is an unforgiving place. I am in a vulnerable place also and I can cry at things I wouldn't have batted an eyelid at in years gone by. Is it ok to cry if you're a man? It is now and I don't really care who knows it. I've cried many times in private. But then who knows the problem if we can't let it out and share it. My partner is great also. You need to talk to someone and get it out of your system - this is the only place I know where the understanding is there - I mean really there, because we have a shared experience. Is your doctor sympathetic? Is there something they may have mmissed in assessing your case? is there something different you think you may have mentioned but never really did? perhaps it's worth going over your case again looking for the missing clue however small it may seem, Columbo style!! Write things down and re-examine it when you think you have finished and I bet you'll think of something else! Perhaps you need to talk to your doctor about pain management, being proactive rather than reactive, so that pain managemet drugs are already in your body ready to fight the pain as it arrives rather than waiting for it to be here and then waiting dfor the drugs to kick in. Does that sound sensible? I'm not a doctor so only do it on medical advice not mine - it was just a thought. Keep your chin up David, I'm thinking about you and wishing you well. You are the same automobile - you just have a different engine at the moment and so performance will be different as well. Problem is your battery isn't big enough just now so you have to keep re-charging more often! Stay well David regards Macca

Mags, You are so right. It is a form of grief. I had been back at work for over twelve months but the fatigue caught up with me along with the depression that goes with not being able to perform as I once did. It is hard to accept. I am going back to work on Monday 28th May '12. Do you know what? I'm frightened, yet I daren't show it. People will talk to me and, as they have been doing, think there's nothing wrong with me because there are no visible signs. The sympathetic ear of colleagues will be there, tinged with their visible but unsaid, disbelief. The work will wipe me out to the point of exhaustion and the same pattern will happen, get up go to work, work, come home, have dinner, bed. Dreading it now. I am growth hormone deficient and can't have my second set of tests until the end of July before they can treat me for it. In the meantime, I just have to suffer the fatigue and thumper headaches, occasional balance problems etc etc. British stiff upper lip and all that! What a load of rubbish that is!! Ok enough ranting - It's a lovely sunny day here and I'm going outside to enjoy my fatigue outside!! Have a great day and roll on retirement!! Macca

Hi Win, Yes it was one of the films, as was the one I mention above!! Hope what I said helps you and your daughter. It's sad, but even when dogs live their whole life expectancy it's still less than ours, so it's important we give them the best time possible whilst they are with us. They give us so much back don't they? It's important to think about the times we laughed and played together rather than the unfortunate demise towards the end? What lucky ladies you were for her to allow you to share her life!! I've only had two dogs in my life - the first lived until he was twenty one and Herbie you already know about. I'm not getting another one until I finish working but I can hardly wait and that might be sooner rather than later if my condition doesn't improve!!! Macca

Win, You have every right to be sad, but your dog gave you a lot of happiness - but remember you gave her a lot of happiness too. As long as you remember her she will be with you. Your love for her was as hers for you - unconditional - often that's more than we humans get! Wipe those tears from your eyes, I can feel you wellling up!!Celebrate her life with good memories and talk about her as if she is still with you - because in you heart - she still is!! My dog Herbie (he was a Heinz 57 mongrel and yes, we did name him after the Volkswagen from the films)died in 2005 and I still miss him everyday,seven years later). I'd had him from a puppy and he was eighteen when he died. I look at his photo every day when I come home, and you know what Win - he still makes me smile! Let's remember, it was a privilege to be part of their lives!! Carl, Kris, I accepted you as friends - I don't know if I did it right but I hope it showed up as such at your end!! Let me know if it didn't and I'll go in again to try and correct it!! technology and I are not as one, shall we say!! Best wishes to all Macca

Carl, those aren't ramblings, they are reflections and realisations about the enormity of the struggle you have emerged from. You appear to have come out stronger, wiser and more able to move forwards with confidence, perception and with a renewed and refreshed context of what is important in life - that is yourself and your family who love you very much. Your humility and humanity are very evident - they are remarkable qualities, ones of which you should be very proud. You are indeed, a very lucky man - count your blessings and wallow in the comfort of all that is dear to you. You are a deep thinker Carl, let those thoughts be about what and who you love, not those disparaging souls you work with. Between them, they are not worth one of you Kris - that's progress, I am sso pleased for you - long may it continue!! Best wishes Macca

Lisa, thanks for your post. Today's another day and come what may I'm not going to let them grind me down - I'm being positive today and if it turns out well, I'm going to do it again tomorrow! At least, that's what i'm telling my self - fingers and toes crossed that it works. I hope you are progressing and gettingt better - keep us informed and I will do likewise! Teechur, you are truly inspirational - I love your positive attitude, I wish I could replicate it, bottle it and sell it! Brilliant! Thank you! Macca

Lisa, I've lost some of that too!! I am a Manchester United fan (that's soccer). They've just had the biggest battle in years with their nearest rivals Manchester City, and when it came right down to it, I just didn't care. Anyone that knows me will tell you that just isn't me, but I thought 'hey, there are more important things in life to worry about'. I didn't used to think like that. I've just been back to hospital today, I've been told I have to have a second round of blood tests. I am deficient in growth hormone which affects all sorts of things in your body. I had glucagon tests to provoke my pituitary gland into producing growth hormone, but it didn't work. I went back today thinking I would be starting treatment with replacement growth hormone. Today I was told I have to have more blood tests this time using Argenine instead of glucagon and only if this fails will I be approved for growth hormone replacement. So now I will have had two lots of tests - apparently it's so they can ensure the treatment only goes to the most deserving cases - presumably you get nothing if you are borderline - but I have to wait another ten weeks before I get tested. That's another ten weeks of chronic fatigue. Doctor says they already effectively know what the outcome will be in my case, but we have to go through the motions and measure everything correctly. So maybe I am a victim of government cutbacks. I know they have to measure correctly because too much of this hormone can be harmful but what a process to go through to get it! Keep your chin up Lisa, keep setting goals and make them a focus to look forward too even if some of these irritants geet in your way from time to time. Go to your antiques fairs, maybe once you are actually there, it will stir something in you, rather than just sitting at home thinking you won't enjoy it. Hard I know but you can do it Lisa - keep telling yourself that - we understand - but it's hard for those around you as well. They need you to be strong and help you from a position of strength. If they can see you are trying to help yourself, they will be more willing to provide the support you need. You, (and I), have to try, even though we might not feel like it at the time. Often you will be pleased after you come back and wonder what you were troubled by. I wish you well Macca

Claire, I read your story with increasing dismay. It just isn't acceptable that these people keep sending you away. Keep plugging away at them - in the best case scenario it's nothing, the worst case doesn't bear thinking about. It sounds as though everyone is trying to discharge their own liability here - isn't that so British? - instead of tackling the issue head on and dealing with it. Do the people you are seeing have the right skill level to do this - are they even skilled enough to be able to tell you what they currently are? Sometimes what you realise doctors don't know is more frightening than what they do know! You keep at them girl until you get some satisfactory answers. I hope you are keeping a diary of events as they unfold. Keep going lass, we're right with you (and keep posting) Good luck Macca

Hi Kris, that's what's missing - the wow factor, it seems like me, that things don't bother you as much as they once did and that you have lost some of your boundaries - or have you? You cared enough to post, you cared not that you have become extrovert and therefore pushed your boundaries further than you 've gone before. What you are doing, it seems to me, is going round the perimiters looking for the fence only to find it isn't there anymore. All that stops you is your own deep seated mental conditioning and the memory of who you once were. Now that you have pushed the boundaries back, you are feeling slightly lost and you are looking for new ones - the old ones are still there - they are just behind you at the moment. It's a bit like riding a bike and realising that someone's taken the stabilisers off because you don't need them any more. Maybe you have found what some of the rest of us are looking for!! Let yourself go Kris, enjoy the new you - you're still in there, but now there's more of you than even you yourself realised!! Every day is a bonus. Believe in yourself Kris - we all do!! best wishes Macca

Winter, Thank you for that last post - it made me feel very proud of you - that's what I call progress. Maybe winter is turning into Summer? Well done - I doff my hat to you!! Macca

Hi Kris, don't mourn the old you, celebrate the new you, others around you should adjust to the new you, not you to them. It may take a bit of time, but before you know it you will have gone full circle and be the old you again - or as near as dammit!! And WinB is right singing is good for the soul 'movin on up movin on out nothing can stop me' MPeople, I think. I hope this finds you well David, did you read my profile? that's me to a 'T' - hope you are well, you too Win!!! Hope I didn't miss anyone, my brain is frazzling fast!! Macca

Hi Ron, this is indeed fantastic news - and look on the bright side, if eventually you have to have the second coilling, you will have another years strength building inside you and you will be able to face it better. And yippee, you probably won't have to have it done at all. I know this is easier said than done Ron, but start planning positive things - try not to dwell on this, for you it is fast becoming history - they must be confident to have told you this and your progresss to date must be excellent! I am really pleased for you. The great thing on here is that everyone has the shared experience even though our lives may be different and we are spread across the globe!! I think, on reading this that you have much room for optimism and give hope to the rest of us still waaiting ofr improvements, Good on ya lad!! Best wishes Macca

Sandi, Thank you for your words, I appreciate them very much indeed, and they hold so much more value when they come from someone such as yourself who has lived the experience. I know what you mean about the brain forgetting so easily - I think that's how I came to overdo it yesterday - -I think I must have been about 25 in my head yesterday, but by this morning I was about 75, Ha ha! That must have been great watching the otters - I would have loved that, they're fascinating animals aren't they? Hope everyone else is keeping well too!! best wishes Macca

Hi Kerry, I've only just seen this thread so sorry for the late reply! Win, SarahLou and Jess are absolutely right in what they say, I couldn't put it any better. I would say though, that you should take each day as it comes, do things in manageable chunks, in stages and, when you feel comfortable, move on to the next, in your own time. Don't forget also, that the changes you have experienced are not just a one way thing. Everyone around you has to change to the way you are now, not stay as they were, so it is essential you keep talking to them so they get to know the better, new you - yes you are better because you now have new life experience. You have the same body with a different engine in it and everyone has to get used to the new performance - it's just different to the way it was. Make sure everyone who knows you knows about your medical bracelet. Keep talking and smiling. In your mobile phone keep a 'ICE number' (in case of emergency contact). We all have them at work in case anything happens whilst we are travelling. As for getting your other half to drive you around - well Lady Penelope had Parker - I wouldn't worry about that too much. Bit of an irritant but useful life is still possible!!! Best wishes Macca

Hi Lin-lin and Goldfish girl, I recognise this entirely. My job is also stressful, decisions to be made are many and I have a large commute. Lin-lin, you will have an enormous wealth of knowledge - is there any way you could use this to teach others? That way you have complete control over what and when you do it - ie when you feel well enough? There would be less pressure and the skills you have would be passed to the next generation, generate some income (consultancy?)etc. That would be moving onwards and generating income at the same time. I have just been back at work for a year and am now off sick again whilst hospital investigate my problem. Fatigue is chronic at the moment. I spent an hour and a half in my garden yesterday and feel now as though I 've been hit in the face with a frying pan. I am just so tired this morning!! It isn't just a case of working through it, in my case I just get more tired than I started out being. Working, going to bed and getting up again to go back to work is no life (it is just existing)- because that is what I was doing, I was irritable, not really carrying my weight, and my home life was almost none existent (hats off to my lady for putting up with me!). Enough ranting - it's a beautiful day here, third one in a row although I know it rained a little during the night - yes I was awake again at 3am!. Hope you are both ok ladies I managed to put my picture up - took me a while to figure it out - don't have nightmares - where did they used to say that? - oh yes Crimewatch ha ha!! Best wishes Macca

Get on to Directgov.co.uk. there should be good info on there. I believe you can access it through your TV set as well if you have no access to internet. Macca

Thanks Cath. Don't beat yourself up - the rugby team's already done that ha ha!. I suffer short term memory loss too! Motivation can be a problem. I deal with it by listening to something that makes me laugh to put me in a good mood. Also doing things with other people to get you started because that is the hardest bit, then you keep going because you then don't want to let them down - that's the guilt complex kicking in. Don't overdo it though because you will suffer next day if you do. As long as they can see you've tried your best they won't expect any more! Do things in what I call 'manageable chunks' Remember not to make a race out of anything or become too competitive - remember the Tortoise beat the Hare - you'll get there in the end. Welcome to BTG!!! Macca

Sorry to hear about your problems, try to stay positive. I suffer with fatigue and those that know me on here will know that I keep going on about the pituitary gland. They're probably fed up of me by now! look up 'Pituitary Gland Foundation' on the internet. There's some great information in there. I know its a long time since your treatment but it's a possibility. Gosh, the body is a complicated thing isn't it? Your condition sounds a lot more complicated than mine but constant fatigue is a nightmare! I know you don't like doctors, but your experience can be coloured by what you have encountered. Mine have been absolutely superb. Any chance of speaking to another? It really will be worth it and not as bad as you think. Before you go, write all your symptoms and effects down so you are not tongue ties or say the wrong thing - take it with you and show the doctor - keep a diary of how you are feeling. You're not alone Lynsey - have a rant on her any time you like. Good luck and let us know how you get on Best wishes Macca

Join the club. My SAH was on 1/9/10. Unconscious for 6 days. Platinum coils, three goes at a llumbar puncture. Felt like I'd met the same rugby team you did, DVLA took my licence for six months but I have it back now. When you get it back you'll find yourself taking a lot more care. You'll probably be a better driver as a result. It is a slow process getting better. I still suffer with fatigue. My pituitary gland is damaged apparently, it distributes growth hormone around your body which affects your general stamina and muscle strength. Doesn't affect everyone. I went back to work after 6 months and have been back over a year but I was getting home and going straight to bed. I am now off work and going back to hospital next Thursday, when hopefully, I can start HRT - yes I'm a bloke going on HRT, I think. I didn't even know men suffered with this - but ladies you have my undying sympathy and admiration if this is what you suffer with. It is incredibly exhausting, mentally and physically because there's no escape from it. But, hey, I'm alive and getting on with it, and the support you get on this site is superb. Paul and Cath it is a long road back and it can be bumpy but as one or two will say on this site, even the longest journey starts with a single step. hats off to the paralysed lady who just completed the london marathon after 16 days with robotic legs to assist her. I feel lucky by comparison. Rant over - welcome!! Macca