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spooniemumoftwo · 4 years

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This is me!

Have you ever heard of ME CFS? Do you know anyone with ME CFS? Have you ever heard the phrase ‘counting spoons’?

Having read a huge number of blog posts on ME CFS over the past few years, this is my own answer to some of these questions. Please bear with me – this has been a work in progress for a while now.

Me – Could I have M.E?

As a teenager, and even recently, I never imagined that I would find myself writing about my experiences of life with a chronic illness, and yet, here I am. I am 33 years of age, a wife and mother to two beautiful children, and I have a diagnosis of Myalgic Encephalomyelitis (ME CFS).

Over the past few years, I have come to realise that ME CFS is something you can’t fully understand or describe to someone unless you have the experience of this debilitating illness yourself.

Where do I start?

Over the last three years, there have been ups and downs; life has been interesting, and the learning curve I have found myself travelling on has been almost vertical at times. I am not there yet.

Back in Summer 2017, I woke one morning to find I had no voice at all. This was unusual for me but not the first time it had happened. Things had been busy and a little fraught with two small children, whilst I was also working almost full time, so I thought nothing of it. I now suspect, as do the consultants I have spoken to since, that this was my body’s way of fighting the Chicken Pox virus, as my youngest came down with Chicken Pox two weeks after I first lost my voice. A week without my voice went by, writing notes for my husband to ignore as he felt appropriate, and giving my children 'the look' instead of telling them what I was thinking, and I spoke to my GP who diagnosed me with Acute Viral Laryngitis, and prescribed me three weeks off work and TOTAL voice rest, much to my husband’s delight and amusement. Three weeks later I returned to work, having slept all day for at least two of the three weeks I’d had off work. I was shattered. I never imagined returning to work after only three weeks off would be that tiring, but I did it. I underwent a further six months of speech and language therapy sessions (ironic considering my own role as a speech and language therapist) to help me work on my returning voice and my worryingly limited breath support, something I had only noticed since losing my voice.

Nearly twelve months on, in April 2018, I found myself signed off work again, this time with suspected Labyrinthitis. I experienced dizziness on and off, and again, I slept for most of the time I was off work. I was finding it hard to put sentences together, and felt like my whole body was being held down by a weighted blanket. Three weeks off work again and then I returned to work and my usual routine, with a promise to myself to take things easier this time. The dizziness continued but not enough for me to be off work, so a referral to a cardiologist followed to check it was nothing cardiology related. A 24 hour ECG followed by a 32 day ECG test demonstrated nothing significant, and therefore this was put down as yet another symptom I had no answers or reasons for.

By August 2018, I realised I had spent the majority of the summer term in schools telling myself ‘if I can make it to the summer holidays, I will be okay’ and yet, there I was, at the start of the summer holidays, and I hadn’t allowed myself to slow down at all. I have always, even as a pre-teen and a teenager, worked towards the school holidays, and continue to do so as an adult. I recall, as a teenager, regularly sleeping for the first one or two days of a school holiday, or suffering with a cold and feeling generally unwell for the first few days after allowing myself to slow down or to relax, and yet, here I was, putting the same pressure on myself as I always had. This time, however, I did not allow myself to rest. I knew what would happen if I did.

August 2018 saw me celebrating my own mini achievements regarding my engagement in a Couch to 5K running programme. I have never been sporty, and running was my least favourite exercise. However, for some reason, in 2018, I decided I was going to make myself enjoy running! I soon found running gave me time to myself with my thoughts, (unless accompanied by one of my chatty little people who often wanted to go with Mummy on a run) and running was my 'me time'. I managed to complete my first ever continuous 20 minute run in the middle of August, a very small achievement for many, however for me this was huge! I was becoming a runner, or so I thought. I only ran once more that month, and haven't managed a run since…

The summer holidays passed by and at the end of August, we celebrated my eldest child’s 5th birthday. I will never forget the call we received first thing that morning, to tell us that my grandfather had sadly passed away in the early hours of the morning. On my daughter’s birthday. I held myself together and threw all of my energy into celebrating my daughter’s special day. I was heart broken, and yet, as always, my children came first, and always will. The day after, we hosted a party for our daughter as we had planned. I could think of any number of places I would rather be, than hosting a children’s party, but for my children, ensuring they were happy, and maintaining the usual normality, especially things they had looked forward to, was essential. After we had cleared up, and the children had been put to bed, revelling in the excitement of the day, I took myself off to the gym, and pushed myself to run as far as I could. I managed a 35 minute continuous run, telling myself “it was just for you, Grandad!'’ I was exhausted, mentally and physically. Running had allowed me time to myself to clear my head and my thoughts on many occasions prior to this, however that night, I was broken. I could do no more. My head hurt, my legs hurt, even my breathing was draining me. I was done.

Two days later, I lost my voice again, and this time, I listened. I listened to what my body was saying, and started to put a few of the pieces together in my story. I have always pushed myself as far as I could push, but I was spent. Emotionally, and physically, I had nothing left. I spoke to my GP in view of my previous significant voice loss, and was instantly told to take some time off work to recharge and rest my voice. I reluctantly agreed to take a week off to recharge before going back to work.

A week later, at the start of September, I saw my GP, accompanied by a very good friend, to make sure I gave the facts and was honest about what was going on. We talked about everything. With the support of my friend, I listed all of the symptoms I had been experiencing, and yet not acknowledged, things I was finding difficult - sensitivities to light and noise, complete physical exhaustion, difficulties concentrating, poor spatial awareness - there can only be so many times a person can walk into the same photocopier in the same position on the same day. (My record was five times one day.) I described the difficulty I had in expressing myself and communicating with others at times, and my concerns about the slightly narcoleptic speed at which I could fall asleep and still feel totally unrested when I woke up, no matter how long I slept for. I raised my concerns and questioned whether I could possibly have some signs of ME CFS, however my GP said that at this stage, she did not feel I had ME, and that there were a huge number of reasons I was feeling as I was at that time. She was right about that, there had been a lot going on. I reluctantly left the doctor’s surgery with a certificate signing me off work for four weeks, and I was under strict instruction to rest completely, and not to return to work within the next four week period. I have never taken time off work willingly, other than for the usual expected absences due to the usual common illnesses, and therefore this went entirely against my work ethic. But this time, I had to - I was spent. I had no idea what was wrong with me, and how long it would last. I was worried and totally exhausted.

A month later, I returned to my GP to try and persuade her I was ready to return to work. We talked about how the last month had gone, how I was feeling, and what my thoughts about work were. I tried to list the positives to show I was feeling better but what were they? I was sleeping all of the time other than when I had to be awake to do a school run, or to look after my children, which I had been doing mainly from the sofa whilst they amused themselves in my sight. I was finding it difficult to carry out simple and regular tasks such as showering, which left me incapacitated and lay on my bed for some time before I could continue with the day. Cooking and preparing meals were a challenge, as this involved me being upright for longer than was comfortable. Having a conversation on the telephone was exhausting, and yet talking to someone in person was strangely slightly easier. I was often disorientated and a slight change in plans left me confused. On really bad days, I frequently could not have a conversation without losing what I was saying, and found it difficult to think of the words I wanted to say. My mind went blank. None of this made sense. I was 31 years old and generally healthy. What was wrong with me? I sounded like I was making this up and began to doubt myself. My GP informed me that she had been thinking about me, and had spoken to a colleague of hers for some advice. She advised that after some thought, she felt a referral to a specialist in Chronic Fatigue may be worthwhile, as it was possible that some of my symptoms could be signs of ME CFS. That made me anxious. I had suspected that this may be the case for me for a while, but to hear a clinical professional confirm my suspicions and want to investigate further sent chills right through me. How and why was this happening? We agreed that I would be referred to the consultant specialist, and I left the appointment with another four weeks off work, and a hope that I would return to work after another month, IF my energy levels had increased sufficiently.

Another month later, I returned to my GP, and despite me still experiencing significant fatigue, I was desperate to return to work and some normality. My GP reluctantly agreed to a phased return to work which would be monitored closely by her. I returned to work, initially for two half days a week, with a view to being back to my normal thirty hours a week by the end of December. I was still exhausted. Each day was a huge challenge, but it felt so good to be back at work! I tried to take things as easy as possible, as I was mindful that I needed to read the signs and listen to what my body was saying. I didn't feel like the person I was before, and yet just being 'me' again, in my usual workplace was a tonic.

In February 2019, I saw a consultant specialist in chronic fatigue, accompanied by another amazing friend. We talked through everything, literally everything! For a whole two hours, we discussed things I was able to do and things I couldn't do. Things I enjoyed and things I didn't. We talked in detail about my childhood, family history and medical history. I was referred for a sleep study to rule out sleep apnoea, and was advised that if the results of this study were unremarkable, then yes, I would be diagnosed with ME CFS. Otherwise, the diagnosis would be sleep apnoea. I felt sick, but with support from my friend, my husband and my family, we talked things through. But there were still no answers.

I am so lucky to have an amazing family and so many loyal and caring friends around me who know me better than I know myself at times. I can't express my thanks to each and every single person who supports us. Those who are there for me, to listen, advise and give the best hugs, and those fabulous friends who just know what to say and do when its needed. Those who try to understand what's going on, and those who know me best! My amazing family and friends regulate me and aren't afraid to tell me what I need to hear, despite this often being the harsh reality that I can't see (or don't want to!). I am often told to rest and that I need to put myself first, but that's not how I work, or it’s not how I've worked in the past anyway. I know I unintentionally frustrate the people I am closest to with my stubbornness and drive, and my reluctance to 'give in or give up', and I am so grateful for the support of so many people.

I finally received my appointment for my sleep study at home at the end of May 2019. I was shown how to fit the oxygen tubes, oxygen monitor and all the gubbins that go with it and was sent on my way. Honestly, the sleep study was not the best night of sleep I've ever had...it turns out I'm a little more claustrophobic than I thought I was. But, by the following morning, the test was done and the equipment was safely returned to the hospital. My pending diagnosis was in their hands now. I received a letter at the start of July 2019, to say that I didn't have sleep apnoea, so there it was. A diagnosis of ME CFS. Mixed emotions flooded me...relief that I wasn't going to have to wear a mask to sleep, and yet dread at reading the words I knew would be in my next letter from the consultant! On 25th July 2019, my letter arrived in the post. It simply said 'I can confirm that this patient has ME CFS. I will refer her to the local ME service for support'. I was numb.

So many questions!

How will this affect my children? What will happen next? Where do I stand with work? Will I need help? What does the future hold? All these questions filled my head. Many questions remain unanswered even twelve months on from receiving this letter. With no cure or successful treatment for this, I felt a mixture of panic, sadness and dread and telling my husband the results we didn't want to hear was hard. How would I be able to be the wife and mother I so wanted to be with this chronic illness? My children are still so young. My husband didn't sign up for this! This all felt so unfair!

Since my diagnosis, I've been supported by the local ME CFS service and their advice has been invaluable. The learning we have done as a family about the illness, the symptoms themselves and life as we know it, has been intense. I am able to recognise some of my triggers and my responses, though these constantly change and have increased in severity lately, but my husband, family and close friends will agree that I'm still pretty rubbish at really listening. I cannot seem to take it all in. I am on overload. I am a giver naturally...I don't come first in my head. I think of everyone else before myself - my children, my family and my friends. That is just me. But it wears me out.

My children

When I was diagnosed with ME CFS, my first thought was not for me, but for my children. This is not how I imagined parenting my own children. I felt a huge sadness that this would mean they had to grow up more quickly, to understand things a young child shouldn't have to, and that we may not be able to do all the lovely things we did when I was a child. I made a promise there and then...ME CFS wasn’t going to stop me doing things with our children. Our promise to our children even then, was that they would come first and that my husband and I would get through this together. This is not my children’s problem, it is mine.

My husband and I agreed very early on, not to give our children the details but just to explain, when needed, that Mummy just needed to rest. This worked for a while and kept questions at bay. I recall one lunchtime when I had prepared a 'picky lunch' at the request of our three-year-old son. I had laid on the sofa while they ate and watched a film. My daughter, aged around five at the time, touched my arm gently and gave me a crisp she had found, saying “Mummy, please have this heart-shaped crisp. It will give you more energy”. Wow!! I'm not sure how I held the tears in...I was completely taken aback! Without telling her anything other than that Mummy was sometimes a bit tired, this little sensitive soul had put two and two together and made her own conclusions. I knew we had to tell her a bit more now, if anything, to make sure she wasn't making her own ‘wrong’ deductions.

We have recently been introduced to a fabulous book which has been integral in our challenge of giving our children the facts they need whilst not giving them too much. This book, 'Supercharged Superhero' by Gemma Everson has been written to help children understand why a parent with ME may not be able to play all the time, and that they can have fun in different ways with their family. We love this book, and my children often ask if we can look at it again. We've spent many hours reading through the story, chatting about the pictures and thinking of our own ways to have fun which I can join in with too. Find out more about ‘Supercharged Superhero’ and get your own copy of this gorgeous book.

The Journey so far – September 2020

My journey through diagnosis and learning to adapt so far has been uphill. There have been some huge changes I've had to make to my lifestyle, specifically our pace of life and my priorities. Having never been able to say 'no' to anyone or anything in my adult life, my major challenge is to start saying ‘No, no, no!’ Such a simple word, and yet I just can't do it! Others always come before me; my family and my friends, and yet I know I need to work on this. I know I unintentionally drive my husband and close friends to distraction...they know me better than I know myself often, and I am always being told to slow down, or to put me first, but I can't. Only when I have no option otherwise.

I spend my life falling asleep without planning to. I rarely see the end of a television programme or film. As a family, we often plan to go out on adventures in the mornings or early afternoon, as my more unpredictable time of day is usually mid afternoon to early evening. With careful planning, we do go out and make memories as a family of four, and we have lots of fun together.

Everyday, I spend huge amounts of energy putting a brave face on to hide what I'm really feeling inside. I can’t do this anymore! I feel like most people only see me in a disguise, only my close friends and family know enough to understand what's really going on, and many of them can read me like a book. Conversely, I am constantly told I look really well, when in reality, I can barely stand up some days! When things are really bad I can't easily hold a conversation, and I often focus all my energy on getting to the end of a day, an hour, a meeting or some other mini target I've set myself. I am wishing time away just to ‘get through’. My illness is an invisible illness, and it is called that for a reason...it IS invisible!

On paper, my symptoms are fairly mild in contrast with others who have the same diagnosed condition. I am able go to work four days a week still, I am able to take my children to the park or on carefully planned day trips, I can still do some of the things I do for me, to allow me to be 'me', although these ‘things’ for me, are usually the ‘things’ I cut out if I need to slow down - leaving no time for Me!

The Present and the Immediate Future

In recent months I have seen a huge flare of my symptoms and have been much more debilitated than previously, but I am hoping this is just a blip in my journey. Working from home and home schooling two young children during the Covid 19 pandemic has not helped. Life has been a bit mad for us all lately, hasn't it?! I can only imagine how people feel, who have much more significant symptoms, and I try to empathise with those whose symptoms are much more severe than mine. ME CFS is so varied and different for each and every person diagnosed with it!

ME CFS is not well understood. As it is ‘invisible’, others do not know I am suffering symptoms that often debilitate me. I cover it well by pretending I am ‘ok’ until I finally crash and burn at home. This is my reason for sharing my story, living with this condition, to promote awareness so that others may benefit from learning about how it affects a person and how people can make allowances. It is not going away!! Maybe I was ‘given’ this condition because I am naturally a strong person who is ‘driven’ to come through everything, no matter what. I do not know. I know that sometimes, I just can’t and I am worn out ‘pretending’. So I have chosen to share this and maybe I can make a difference to someone else. Acknowledging symptoms is just the start. Getting a diagnosis is paramount, and getting the right help is vital for any kind of future.

You've got this far, well done! Look out for how my story unfolds. Until then, we must stay positive!

XxXx

#chronicfatiguesyndrome #chronicfatigue #mecfs #me #myalgicenceohalomyelitis #cfsme

#myalgic encephalomyelitis #chronic fatigue syndrome #spoonie #mecfs #fatigue #low energy #cfswarrior #spoonies #pwme #chronic illness #cfsme #cfs/me

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multiple-nerdery · 7 years

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All asks

1. Are looks important in a relationship? Done

2. Are relationships ever worth it? If I thought the answer was no, I wouldn’t be in one so...

3. Are you a virgin? Not since almost a year ago

4. Are you in a relationship? Yes and she’s perfect

5. Are you in love? See above

6. Are you single this year? I am not

7. Can you commit to one person? Can have and am

8. Describe your crush done

9. Describe your perfect mate Its my gf of course she’s perfect

10. Do you believe in love at first sight? Nah. You have to know someone to love them.

11. Do you ever want to get married? I could see it happening. I wouldnt mind if it didn’t. Its way too early inn my life to think about shit like that

12. Do you forgive betrayal? Done

13. Do you get jealous easily? Done

14. Do you have a crush on anyone? Guys I think I might hhave a crush on my gf

15. Do you have any piercings? I want some

16. Do you have any tattoos? I want some

17. Do you like kissing in public? Not if other people are doing it, but so much yes if i’m doing it

20. Do you shower every day? Who tf doesn’t

21. Do you think someone has feelings for you? Guys I think my gf might have a crush on me

22. Do you think someone is thinking about you right now? My gf is asleep so mayybe she’s dreaming about me. (also my bff thinks about me she’s gay andcool)

23. Do you think you can last in a relationship for 6 months and not cheat? I’ve done it before

24. Do you think you’ll be married in 5 years? Doubt it. I won’t even be finished with grad school

25. Do you want to be in a relationship this year? I want to be in the one I’m in

26. Has anyone told you they don’t want to ever lose you? Ye

27. Has someone ever written a song or poem for you? done

28. Have you ever been cheated on? not that I know of. Since I trust and care about my exes, I will believe they didn’t unless evidence happens

29. Have you ever cheated on someone? done. but it bears repeating. no. I could never

30. Have you ever considered plastic surgery? If so, what would you change about your body? Nah. It’s too expensive

31. Have you ever cried over a guy/girl? Yep

32. Have you ever experienced unrequited love? Ye boi

33. Have you ever had sex with a man? No

34. Have you ever had sex with a woman? well all of them are nbs. so... i guess also no?

35. Have you ever kissed someone older than you? yep

36. Have you ever liked one of your best friends? yeah friendships are how crushes start for me. not my current best friend though

37. Have you ever liked someone who your friends hated? More like one asshole friend who tried to slander the relationship, seduce me out of it, and then when it ended for other reasons, almost immediately accused me of trying to sabotage thier relationship for just being friendly

38. Have you ever liked someone you didn’t expect to? I never expected to like anyone.

39. Have you ever wanted someone you couldn’t have? All the damn time

40. Have you ever written a song or poem for someone? Ye. I recorded a cover once too. I might do that again but would have to choose the song.

41. Have you had sex so far this year? This is the year in which I have had the most sex.

42. How long can you just kiss until your hands start to wander? As long as the person I’m kissing wants

43. How long was your longest relationship? 2 years, 3 months, 29 days but it was on again off again a little bit

44. How many boyfriends/girlfriends have you had? 4, but #3 is the same person as #4

45. How many people did you kiss in 2012/2013? none

46. How many times did you have sex last year? In 2016? No more than like 7

47. How old are you? 18, 19 in 8 days

48. If the person you like says they like someone else, what would you say? I would cry

49. If you have a boyfriend/girlfriend, what is your favorite thing about him/her? can I say everything she is so cute and perfect oh my god and her sense of humor is great i could just lay around all day watching youtube with her

50. If your first true love knocked on your door with apology and presents, would you accept? far as I know, he has nothing to apologize for. I’d be impressed he made it from (Iowa?) to NYC tho. And i love presents i always accept them

51. Is there a boy/girl who you would do absolutely everything for? Yep. She my gf

52. Is there anyone you’ve given up on? Why? Ahngst person. I’m through putting up with their bullshit about abandoning people who care about them. They hurt multiple of my friends, irreparably. They avoided us when we happened to run into them in the coffee shop they work at but then turned around and started low-key stalking my bff. they don’t deserve any affection from me. I don’t hate them, but they can’t be part of my life healthily anymore. Maybe as friends, much further down the road, but they havve to put in the work for that because hell if I’m reaching out to them.

53. Is there someone mad because you’re dating/talking to the person you are? Last time I dated her there was.

54. Is there someone you will never forget? most people

55. Share a relationship story. with the person I’m currently dating, before we were dating, wee were both up late at night talking, and she told me to go look at the stars which were pretty, and she was pretty high and so we went to go get food because she was also hungry and we got chicken nuggets and a pie, and then we laid in a field together and watched the stars

56. State 8 facts about your body I’ve got hands, those hands can type, I’ve got some hair, I have a nose, I have functioning (but not well) eyes, im tall, I’m p skinny because teenage metabolism and I like destroying my body recreationally.

57. Things you want to say to an ex #1: how is things in iowa ya nerd. #2: sorry for putting you through some shit, but I’m glad you value what you got out of it. #3: I love you more than anything thanks for asking me back out.

58. What are five ways to win your heart? gotta be cute, then be really nice to me, then hold me in your arms, thentalk with me for hours on end and finally share memes with me

59. What do you look like? Haha nope

60. What is the biggest age difference between you and any of your partners? 1 year 2 months 4 days

61. What is the first thing you notice in someone? whether they are a human or a lizard

62. What is the sexiest thing someone could ever do for/to you? real talk, I’d kind of like someone (who i love and care about) to get on top of me, tie my hands up above my head, slap me a little and call me names. maybe have me wear a collar too. while i struggle to try and touch her. (OR, you know, a loving and caring relationship, the sexiest thing of all)

63. What is your definition of “having sex”? most sexual contact counts

64. What is your definition of cheating? having a romantic or sexual interaction with someone who is not your partner, that your partner either doesn’t know about or doesn’t condone. flirtinng can count

65. What is your favourite foreplay routine? passionate, rolling around the bed/floor makeouts, neck biting, hickey receiving (and to a lesser extent, giving). teasing. lots of teasing.

66. What is your favourite roleplay? Never done any of those. I don’t think that’s really my thing. (My least favorite is daddy/daughter play)

67. What is your idea of the perfect date? spending any time with my GF whatsoever

68. What is your sexual orientation? asexual, but i’m really sex positive. like. sex is nice but i’m not attracted to anyone

69. What turns you off? trypophobia images. bumpinig heads into places they shouldn’t go. condom breaking. parents coming home thats a big one.

70. What turns you on? being bitten, being pushed down, being challenged in a sexual context, driving esp at night, the idea of doing things in someone elses bed (as long as its clean and they don’t find out), holding hands

71. What was your kinkiest wet dream? I haven’t had a wet dream in a long time, and the last time i did, it was about fucking a chair so.... eh

72. What words do you like to hear during sex? any variant of “oh that feels so good oh my god mmm yes right there don’t stop fuck me harder” and various pleasure moans

73. What’s something sweet you’d like someone to do for you? love and cherish me forever.

74. What’s the most superficial characteristic you look for? does she have a face i could stare at all day and not get bored of it?

75. What’s the sweetest thing anyone’s ever done for you? romantically, making out in the backseat of a moving car. platonically, driving the car so me and the other person could make out in the backseat even though we were supposed to go home. There’s more i’m sure but I can’t think of them

76. What’s the sweetest thing you’ve ever done for someone? dunno.

77. What’s your opinion on age differences in relationships? some age differences are okay. some are not. For instance, I’m gonna be 19 next sunday (not tomorrow) and my GF is 17, 18 in october. That’s an okay age gap. 16-20 is not. It has to do more with experience than age, though, since a 16 year old is a child in high school, and a 20 year old is a grown adult in college

78. What’s your dirtiest secret? who I lost my virginity to

79. When was the last time you felt jealous? Why? my gf commented positively on the photo of one of her past crushes. recently. I was worry but I trust her and I know she loves me

80. When was the last time you told someone you loved them? last night

81. Who are five people you find attractive? my gf, my girlfriend, my significant other, my partner and the girl that I love (they’re all the same person)

82. Who is the last person you hugged? shit its been a while i don’t even know

83. Who was your first kiss with? my first bf

84. Why did your last relationship fail? she wasn’t in the right place to be dating at the time. but she is now, and I love her more than anything

85. Would you ever date someone off of the Internet? iunno

#Anonymous

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