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I have just been diagnosed with M.E

Hey ladies, have started a new thread as was trying to follow the other one but was getting a bit confusing.



Anyway so I was finally diagnosed with M.E last thursday. I have definately known it was coming for a while as I was pretty certain that it had to be M.E but it still really hit me. It really sunk in when I had to go into work today and tell my manager all about it. He was very suportive and has said he will help me to do everything so i dont have to give up work but i cant help feeling very low.





I am getting married in may next year and although i can still walk at the moment, i have just got it in my head that in a years time I will be so much worse and may not be able to walk. I know I am being very negative, its just I'm still only 19 and so just cant seem to think positive at all. It just seems too young to be this ill. I mean I ordered a walking stick on the internet the other day as i am really struggling to walk any distance and it just felt so depressing to be doing this at 19. I can joke about it but deep down i am really low.



I now feel like I am being a real moaner as there ar ealways people worse out there, but i just needed to get that off my chest so sorry fo going on a bit!!



Steph x

Posts

  • Hi Steph,



    I could read this and not comment because I have been where you are!



    I was told when I was 19 I had ME, I was in my first year at uni and the dr sat me down and said you have to leave uni and rest for up to a year! I just didn't want my life to stop I am now 24 and have been diagnosed with a condition in my spine which has actually caused all my symptoms for the past 14 years! I also ignored that dr got an economics degree under my belt and an MSc in International Finance and I am now in my second year of my PhD! I have a wonderful fiance and a wedding to look forward to!



    I know how hard it is to accept an illness but you have to think about all of the goods thing in your life and what you can do not what you can't do! I know I have stupid legs but I will never be an athlete (or a traffic warden hahaha the dr said I couldn't do that kind of job like I would want to!!) but I am smart and I have used that to get me forward in life!



    Sometimes I get tired ...VERY tired but I have a caring fiance who understands and I am sure you have one too! I find eating regularly really helps my energy levels. I also love swimming when I can. But the hardest thing I guess was listening to my body, you think you are young and can run about like your freinds but you have to take things easy when you are tired!



    You could google ME association and this can provide you some support? also show it to your fiance, it might help him understand your condition so he can help you too!



    It will be good for you if you keep working because it may keep you going sometimes being at home alone can make you feel worse.



    I hope this little ramble helps you? may bring some comfort that others have been there at your age and you will be ok!



    M x



  • stephie3ukstephie3uk Posts: 288
    Hello, thankyou so much for replying to my message. it definately helps to hear that it has happened to someone else and that there is light at the end of the tunnel!!



    My propblem seems to be if i am having a good day then i overdo it way to much and then suffer for days afterwards, i guess thats just learing how to deal with it over time.



    Yes i have been looking ont he m.e association website and also the action for m.e website, which does have some usufull things on it. the specialist i have seen has also referred me to a group managment course, which i will do in a couple of months. that should help me learn how to manage it better. and my bosses at work are being so supportive.



    I have got a great fiance but he is finding this all really hard to deal with, he just seems to be in denial that there is anything wrong with me. i guess thats also gonna take time, he just doesnt like seeing me so ill.



    thanks again for replying, it has definately helped!! hope your as well as possible.



    steph x
  • Steph,



    I forgot to mention, four people in my street were all diagnosed with ME, Three houses in a row VERY strange!! Anyway I know that two of thier tried cognitive behaviour therapy and this really helped them? maybe the support groups will cover this type of therapy?



    Also I don't know if you have read about ME (sure you have), but you can go through long stages months even years when you don't have symptoms so try not to be too scared about what the future holds!



    as for your fiance I can understand this too my fiance took a long time to get used to me but he is fab now...to be honest some days I say I can't do this or that and he says ok go get a shower for me please...I do that and he says why dont you dry your hair...how about something to eat all these small steps and before I know it he has me out shopping or in the cinema just by making everything seem easy?



    I am glad you feel a bit better...just think you know what the problem is and thats half the battle!



    Keep smiling you have a wedding to plan for!...When is the big day btw?



    M xxx
  • stephie3ukstephie3uk Posts: 288
    yes I have heard about cbt, hopefully they may be able to cover it in the group. I will give anything a try. My dad is paying for me to have acupuncture, im not so sure it will help but as i said- i will try anything!!



    Aww your fiance seems great, im sure mine will start to deal with it soon, I susppose i forget how much my M.E affects other him and other people as well as me.



    Mine is the 21st of may next year, and i cant wait! I cant quite believe its less than a year away now image. what about you??



    steph x
  • accupuncture is meant to be very good for pain I know a few people who have had success with it! My physio offered me it but I havent took him up on that offer! lol



    aww thats great see you will be soo busy picking your dress and flowers and cake etc you wont have time to think about your health!



    I am jealous! I am not getting married till the 25th of April 2013! I wanted to wait till after uni finishes! we are getting married in a cathedral in Rome...then a meal for 15 in the Hassler hotel (this is where tom cruise and hatie holmes stayed when they got married!) image



  • ihavegoblinsihavegoblins Posts: 607
    hi hun,

    im so sorry to hear that you have ME (my godmother has ME).

    Im 26 and was told that i have MS 3 months ago so i kind of know how you are feeling and have the same kind of fears (ie am i going to need a wheelchair..etc..etc).

    when i was told that i have MS i was relived and deverstaed at the same time. my neuro ha put me on treatment which i hope slow the ms down but i will have to wait and see to see if its working. im also trying to learn not to push myself too hard.

    give yourself time to come to terms with your ME and try to be kind to yourself (in both mind and body) and when your reddy you will find that insteed of saying i cant do..... you will find yourself saying i can do....

    also find out about the spoon theory i found that it helped me to both understand and explain to others about how my MS effects me and i think i might help you too.x.image
  • mrsgLmrsgL Posts: 682
    hi, i am sorry about the news that you have received. i read it but didnt just want to leave. my mum and my grandad both have ms. i know its differnt from me but both have been very brave, obvouisly both have good days and bad but seem to get through it. my grandad has been in a wheelchair for about twenty years, he can walk but not very far, my mum has deteriorted now and her doctor thinks she will have to use a chair soon. my mum has had to give up her job but her spirts are so high, she wont let nothing get her down.

    sending my love

    xx
  • stephie3ukstephie3uk Posts: 288
    thanks for the nice messages ladies, its just so nice talking to people who understand, and not having to try and expalin it all the time.



    Mrs JLo2b, your venue sounds fantastic, just think what you have to look forward to, how lovely getting married in rome!!



    Star, I know what you mean about being relieved and devastated at the same time, it was so good to finally have a definate answer but it seems to make it all so much more real.



    Mrslewis2b, its amazing your mum is still in such good spirits, she must be a very strong lady, im just hoping I can be as strong.



    thanks again for the messages,



    much love



    steph x
  • ana_leighukana_leighuk Posts: 474
    Hi Steph,



    i just wanted to reply and tell you not to loose hope. i'm 26, and i've had ME since i was about 12, but was only diagnosed last january. i think its normal to get almost depressed about the diagnosis, even if you expected it. the day i got diagnosed i was on top of the world, because i finally had an answer i'd been looking for for half my life! but in the weeks and months after i had a lot of ups and downs. it takes time to adjust to the diagnosis, so don't expect too much of yourself.



    and don't put any pressure on yourself about what you'll be like in a years time - if you get as much help as you can, and remember that you will only get worse if you keep overdoing it, there is every chance you will feel great on your wedding day.



    as for planning the wedding, you can take it into consideration as well - have the ceremony in the afternoon, so its not too long a day for you, make sure you have lots of opportunities to rest etc but don't worry too much - adrenaline will still kick in so its very likely you will feel much better on your wedding day than you do on a normal day.



    sorry, i've rambled on a bit, i just wanted to let you know there is light at the end of the tunnel!
  • stephie3ukstephie3uk Posts: 288
    thanks mrs b2b, good to hear from you. so sorry it took so long for your diagnosis, i am quite lucky in that it took only a few years for mine.



    This is what i am doing now, tryign to use all the help on offer, from work ect.



    i wanted to ask, has any of you ladies had any experiance with acupuncture and chinese herbs? Im a bit dubious now as i went to see one lady and she reckons she can completely cure me!! I just keep thinking if that were the case thrn no won in england would have M.E as tney would all be cured now!!??



    when is your big dad MrsB?



    steph x
  • ihavegoblinsihavegoblins Posts: 607
    imo if someone says "i can cure you" (unless they are a doctor who knows about your illness) then stay well away from them.

    they clearly dont understand your illness and are using your hopes and fears to just make money of you.

    however its always good to try different things that MAY help you feel abit better or MAYBE relive symptoms you have but make sure that they are profesional and have had proper trainning coz you dont want them doing more harm then good.x.
  • ana_leighukana_leighuk Posts: 474
    hi Stephie,



    i actually got married nearly 2 years ago, about 6 months before i got diagnosed. i had quite a bad relapse after the wedding and honeymoon, but thats because i was running around like a crazy person for months before the wedding, and kept pushing myself when i got back from honeymoon.



    i agree with Star, that i would be dubious at best of someone who says they can cure you - if there was something that definitely worked for everyone then no-one would have it for very long, because everyone would do it! acupuncture is meant to be great for easing the symptoms though, and may well be really good to help you increase your mobility.



    you might find this website helpful for peoples experiences of treatments etc http://www.mecfsparents.org.uk/index.htm i came across it last year, and its really helpful about ME in general, and its good because everyone on there is doing everything they can to lead 'normal' lives. if you go to the message board areas, there are lots of different topics, not just related to being pregnant, but to do with treatments, advice on benefits etc.
  • Hello stephie3



    I am sorry to hear that you have had the diagnosis, however I know totally where you are coming from, having that diagnosis is a powerful thing and feeling very overwhelming! I was diagnosed myself in December 2008, after been unable to work since August of that year.. My primary diagnosis is Fibromyalgia with secondary CFS/ME, both the pain and sheer exhaustion are major factors, along with numerous other symptoms that bother me.



    As the other wonderful ladies have said, whilst this illness is complex, debilitating and to a degree life changing, you can "learn to live and deal with it". It doesn't happen over night, and if only there was a "miracle cure", we'd all be in our element and the queues would be huge.



    I am not sure what help and assistance your GP has offered you, some can be unbelievably supportive and helpful, understanding and reassuring. Whilst others can be dismissive, unhelpful and blase about the effects this illness has on you, your way of life and your family and friends around you.



    I met my H2B a little over 3 years ago now, and bizarrely enough his sister was diagnosed with ME 2 years previous. So when I started to feel really ill and unable to work, it never crossed my mind that it was possible we could have something similar. When she was first diagnosed, she was offered a course of anti-depressants and a course of GET (graded exercise therapy) now anyone who has this illness knows that most days the thought of willingly been capable of "exercising" is a great luxury of energy we can ill afford. She sent off for numerous miracle potions, pills and cures and none of these worked. Through a relative she came into contact with a wonderful Doctor whom specialises privately in ME/CFS. She never claimed to "cure" her and but would indeed endeavour to assist her with her recovery and do so because she had been a fellow sufferer, for the last 10 years prior 2 of which were spent totally bedridden. So when I received my diagnosis I knew straight away that my future health would lay in the very capable hands of this Doctor, even though she runs her clinic in the BMI Lancaster Hospital and we are some 100 miles plus south. I asked my GP to refer me to her as my chosen specialist as the offer of Anti-depressants and GET was not my idea of recovery, to me recovery means to feel better not mask the problems. She has been worth every penny and trip that we have made to her and my health as it stands now is totally 100% down to her wonderful knowledge, the wonderful bio chemist who does amazing blood tests that tell you things you never knew could possibly exist and her dedication and constant research into this illness is without a doubt relentless and persevering to the cause, she truly is a wonderful lady. My only worry is she is retiring next April image !!



    My FSIL is a total marvel now, after 5 years since the diagnosis she has returned to her previous occupation, except with a difference she is a partner in her own business of a Chartered Accountants. She has returned to play and coach badminton for her county and does so many nights a week. She leads a relatively normal life once more and is an inspiration to me in my recovery. Don't get me wrong she has bad days and on occasions bad weeks, but then she slows her pace right down and works from home or doesn't work at all and rests and luckily her boyfriend who shares the badminton coaching takes on her training sessions. The key word here is "pace" it is something you will hear many times, and thats what my FSIL does. I am still trying to master the art of pacing and I am sure one day I will get there. I have come on in leaps and bounds in comparison to when I was first diagnosed, I've taken steps forwards and several backwards, i've been in tears and so frustrated because I can't even do basic normal every day tasks. Just take each day as it comes to you, keep yourself a diary of how you feel, I was given this by my specialist it was a daily chart with each hour in a block, you wrote what you did and then coloured in a traffic light system, ie: RED - TOTALLY EXHAUSTED, AMBER - EXHAUSTED, GREEN - YOU FELT YOU STILL HAD ENERGY TO DO THINGS.. It was a useful tool that shows what you do and how easy it is to as you say overdo things..



    I really hope this has helped you and hopefully given you hope beyond hope that you maybe 19 and feeling written off, and no you'll never cure this illness, but with an aided recovery and PMA you can pace your life to what will feel massively normal and greatly improved to how you are at this present moment.



    I wish you a safe and steady recovery and if it does get too much don't shut folk out share your frustrations and problems. Sending you (very gentle) hugs and best wishes x x x



    And to the other ladies best wishes for those glorious good days and Happy Planning for the wonderful weddings we are all here sharing image x x x x




  • stephie3ukstephie3uk Posts: 288
    Hello Mrs Jeffries,



    thankyou so much for your message, it was amazingly uplifting to read after a very bad day at work. Im so glad to hear you have found someone that could help you and hopefully even when she retires you will continue to improve from all the things she has done for you. Hopefully I can find someone who is as understanding as a willing to help. Its so nice to hear a success story for you sisterin law (even though it will never be a complete recovdery) its good to hear of someone getiing on so well.





    I hope you continue to improve, and good luck for your big day!! when is the big day btw?



    thanks again for taking the time to leave such a lovely message.



    hugs and much love. take care xxx
  • Hello again stephie3



    You are very welcome and it was very nice to hear that you found it a positive message and inspiring.. I cannot even imagine how you are managing to cope with the illness, it's effects and work right now.. Have you spoken with your HR department or boss to see if it would be possible to reduce your hours? I know that probably sounds very scary and financially scary too!! But it is important that you take the steps to start really looking after yourself..



    My FSIL is an amazing inspiration and a wonderful person, determined, consistent, willing and completely at one with what she has to do to keep the illness at bay. As I mentioned sometimes it does jump out at her, but for the most part she is really stable these days.



    If you would like I would be happy to give you the name and number of my specialist who currently treats me, as although she is shortly due to retire I know she will know of other colleagues who could be able to help and assist you. If you e mail me at [email protected] I would be happy to help you with the information...



    In the meantime as happywife2b as mentioned about the lightning process it really is worth looking into. I have been so very lucky with my fiance, my family and his family all helping me out with financial contributions towards my private healthcare! Very fortunate indeed..



    Ahhhh the wedding, we get married on the 10th September this year, I have thoroughly enjoyed planning this wedding, when my OH proposed and got down on one knee, he said that although I was a broken doll at the moment, he would hope to meet me down the aisle when I was fixed and well again image ... This wedding has kept me going in some of the darkest of hours and bad times, in fact this website alone has been a sheer escapism from those four walls!! So when is your wedding my love? I hope this news hasn't changed your plans and proposals for your big day..



    Take care my love and take strength from the knowledge you are not alone, there will always be a friendly response from folk on here....



    Hugs and Loves K x x x x




  • stephie3ukstephie3uk Posts: 288
    Hello again. yes I would be gratefull if you would give me your specialist' number, I will email you later on.



    Wow not long untill you wedding now, you must be very excited!!

    Mine is on the 21st of may next year, and so far none of the plans have changed. I cant believ its less than a year away now. Although I am in major panic of the posibility of walking down the aisle with a walking stick!! Saying that, at least my ailse isnt to long hehe so i should be able to manage it!! image



    I know what you mean about this website being a huge support, it really has helped just coming on here to speak with similar people. And planning the wedding has been a major factor in me staying at all sane through all of this!



    It sounds as though you have a really great fiance there, your very lucky. so i am I actually image



    take care



    steph xxx
  • Hiya stephie3



    Just thought i'd bob by and see how your doing with accepting and coping with diagnosis and the illness itself.. I have been looking out for an e mail from you, but have not seen anything.. I know sometimes we can jot things down wrongly and i'm worried that your awaiting a reply from me as regards the info..



    Hugs K
    x
  • stephie3ukstephie3uk Posts: 288
    hello again, just sent you an email now image



    steph xx
  • Hey Steph...



    You have mail now too image ...



    Huge hugs honey x x x x
  • Ally_WarlowAlly_Warlow Posts: 104
    Hi Steph

    you've already received a wealth of information from everyone else but i just wanted to say it would be best for your recovery to reduce your hours at work. i was able to stop all activity all together and as a result my recovery has been more positive. There should be an OT on this management course you are going on (i did one as well and it was so helpful) the OT will negotiate with your work to find a suitable working condition for you so that you can return to full time at your own pace.

    as to planning the wedding make a list of everything that needs to be done and divide it between the months leading up to your wedding so that you're not doing too much all at the same time or just before the wedding, make sure you've got at least two weeks before when you don't have to do anything. it's all about being organised.

    i found pilates really helpful in managing my pain and mobility. i found a 45 minute class run by physiotherapists, a small amount of gentle exercise every week can be really beneficial.

    If you can make it up the isle you can always sit for the rest of the ceremony and make sure the reception venue can provide you with a room to rest in away from it all.

    you probably will find that pure adrenalin will get you through the day but that you will crash afterwards so if you haven't booked your honeymoon yet i'd suggest giving yourself a couple of weeks, you don't want to book an amazing trip and then not be able to enjoy it.

    it's so annoying being knocked down with this at a time in your life when you should be able to do anything you want (i'm 23 was diagnosed when i was 20) but managing the condition can mean you get to do some of those things, albeit in moderation and you can enjoy the fact that your h2b will have to learn how to do the housework, i'm currently training mine but the world cup has caused a slight hiccup in his domesticity.

    sorry after saying i only wanted to say one thing i've rambled on for a while.

    I hope you find the management course helpful and that you go from strength to strength

    xxx
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