Oh Well!

Its been a bit of a mixed bag over the last few days. My ptosis is still not resolving and my facial weakness is becomming more pronounced. Ive spent quite a bit of time on oxygen and my legs are definately weaker. My neck is also playing up and I’m finding it difficult to keep my head up. Ive tried using the collar which my sister has loaned me but for some reason its pressing on my windpipe and making me feel quite uncomfortable. So no real change in my condition.

I spoke to C at Oxford, a lovely lady. I rang and left a message on Monday and within 24 hours she had got back to me. She has given me a plan of action regarding my admission and confirming my bed. I now know who I need to call on Sunday evening and if that doesn’t work I’m to call Monday morning and I’m not to set off until the bed is confirmed. Shes also told me what the planned activities are regarding my stay. She also told me if I have any problems off the mestinon like my breathing goes haywire I’m to take it and not worry.

We had a good laugh also about how notoriously difficult it is to get any blood from me! She’s so proud of herself that she got it first time last time I saw her. Most nurses who regularly take blood take at least two attempts to get a vein. The national blood service asked me to no longer darken their door years ago after taking 45mins to locate a vein only for it to clamp up after 100mls! (did the blood donations before I was sick). The national blood service take blood all day every day 7 days a week so I must be difficult! The most attempts to get a vein was six by a student Dr. It doesn’t hurt me when they do it, I just dont like them digging around inside my arm with a needle when they’ve got it in the wrong place! CG suggested we tattoo a cross above a spot that’s known to yeild!

Ive also been sent paperwork today to renew my ESA, they actually only pay my national insurance, I don’t qualify for any benefit from them due to my medical pension. My condition has actually worsened so it should be fine but you never know, I may need to go and have a medical. I have until the start of April to complete it so I am waiting to see what the hospital admission reveals before completing it.

Laughed my head off yesterday and I mean to the point of tears! All because my husband actually screamed whilst playing Alien v Predator on the PS3. The reason he screamed was because an alien jumped out on him. He was truly terrified. I did try and point out that it wasn’t actually real but that didn’t go well!

I follow another blog called sleeptalkin man, it is the funniest thing on the internet. However if you don’t like swearing don’t read it! This guy called Adam talks in his sleep and his wife records it and puts it on the internet. Tears run down my face when I read it! It makes me laugh so much and brightens up my day every day. So if you need a laugh take a look!

Slow Decline…..

I had a wonderful day yesterday. I spent time with my lovely 5 and a bit month old nephew and my parents. He’s pretty much on the go all the time and you really do need eyes in the back of your head!

Last time he was here a few weeks ago, I held him and played with him for a couple of hours. He loves it when you sing “row, row the boat” and you have to rock him in time with the music and also “patter cake patter cake” is also a firm favourite. Unfortunately this time it was all too much for me. He’s only put on a 1lb (roughly) since his last visit, but I didn’t feel safe holding him. My arms were shaking and I couldn’t concentrate. It made me realise how sick I have become in only a few short weeks. Thats the problem with this illness it creeps up on you and by stealth slowly removes different activities that previously you could do.

By the time my visitors left (and I was sorry to see them go) I was pretty much stranded on the sofa for several hours. All I could do was lie there and watch a film and wait until my body had recovered enough for me to be able to get to the toilet (my porta potty in the kitchen) My parents left before 4pm and I was unable to move until about 7pm.

I no longer panic when things are like this. I used to panic constantly when my body betrayed me in this way. I have come to the conclusion if I have to wet myself because I can’t get to the bathroom its no big deal. The suite is leather and my clothes can be washed. Its not nice but I’m not proud.I can take the chance and try and get to the kitchen, but its a hard floor out there to get stranded on, so I was better just waiting it out.

Today hasn’t been awful but its not been good either. My ptosis is failing to resolve even though I have increased the mestinon to 75mg every 4 hours. I read a site today for neuro opthalmologists, it was to do with checking for bilateral ptosis, because unless you check it can be easily missed. You may think that’s a strange thing to say – but I missed it and its happening to me. I always really consider myself to be suffering from unilateral (one side) ptosis, when in fact I discovered today its bilateral(both sides). Don’t get me wrong there are wonderful occasions when both my eyes shut! Oh the endless hours of fun this provides!

This type of bilateral ptosis is very sneaky and probably only a neuro opthalmologist would spot it. The test is very simple, I performed it by looking into a mirror. Firstly you cover up the eye with the obvious ptosis, then you close the “good” eye and rest it for 20/30 seconds. Then whilst covering the eye with ptosis, you open the “good” eye. The good eye opened fully and then slowly the eyelid began to droop and ended up in a position where it was covering over half my pupil. Hence bilateral ptosis! Not unilateral as previously thought. When the eye with the ptosis was covered the muscles in my forehead above the “good” eye relaxed letting it fall into its natural position. When I have bad ptosis my left side of my forhead fights a valient battle in trying to raise both eye brows to get my right eye to open. So on the left side I look like I’ve had a shock or a facelift and on the right side I look like I’ve had a stroke.

Just another of my party tricks that I have taught myself! Along with placing an ice pack above my right eye to cool the neuro muscular junction, this allows my right eye to open and the eyebrow to go back to its normal position.


Well the shopping was delivered but I didn’t unpack it. Unfortunately just a few hours after I posted that blog, I had to call my husband and get him to come home from work.

I had woken a few times in the night with backache, right between my shoulder blades. Each time I woke up I shifted positions. I still had it in the morning when I came downstairs but then I started getting pain underneath my ribs on the right hand side. It developed really quickly and then I started being sick. It was awful I couldn’t get comfortable. I could only lie on my left side, it was agony if I lay on my back. My husband called the local surgery and the duty Dr came out to see me. As the pain was in a band the Dr said it could be shingles starting up or it could be my gall bladder. (Its the second attack of pain I’ve had in the last 6 months that could be my gall bladder. Its been scanned and has drawn a blank!). She gave me a perscription for some codeine and told me to call the surgery if I developed the shingels rash or the pain got worse.

Thankfully the pain settled over a few hours. Im still tender and feeling very tired, but I haven’t taken any pain killers today.

At 930am this morning there was a knock at the door and the district nurse was there. Dr Y my Gp had seen that the duty Dr had been called out and sent the nurse around to do some bloods, to see if its my gall bladder. I’m actually very impressed with that Dr Y.

So now I wait and see if anything shows up. It didn’t last time but you never know with me and my weird presentation of illnesses!

Hospital Admission

I received my hospital admission papers today. I have to be at the ward for 1130am and ring the ward at 830am to confirm they have a bed available for me. The problem is that I live 3 -4 hours drive away from the hospital and will need to set off at 7am. I have contacted the hospital today to explain the issue, because my mum who is coming with me has to book a hotel room on top of having to leave before the stated 830am phone call. I understand that they can’t confirm bed space until that day, but when someone is travelling the kind of distance we are, their approach should be more flexible.

Waiting for the shopping to be delivered today. I try and do the shopping online to save my husband having to do it. The only problem with this is actually having the ability to put it away! I have developed a system where Frozen and chilled get put away first. Then I rest for an hour or so and put the rest away in stages. It can be a bit of a nightmare and it has been known to reduce me to tears on occasion. Other than that there are no exciting plans today.

Feeling Better

Just thought I would let you know that I am feeling mentally a lot better today. Yesterday I felt very low and utterly without hope. Today I feel stronger. My MG symptoms are just as bad as they were yesterday, but I can live with them today.

I have ptosis and double vision again. My mouth is drooping on both sides and I’m struggling to close my mouth. Mestinon is not relieving these symptoms, but I can deal with it today.

Luckily I have the support of people on the forums, friends and family. I feel sorry for those who do not have such support.

Bad times

Sorry…..I really haven’t been on here as much as I want to. Thank you to those of you who have been following my journey.

I’m really struggling at the moment. I haven’t been well since Friday last week, my right eye has been shut pretty much continously. (For those of you who think this is no big deal tape your eye shut for 24 hours and see what its like. I think you will probably manage an hour before you decide you have had enough).I’m suffering with double vision as well. I’m very weak and any movement is sending my heart racing. Being on my feet is causing me to feel like I’m going to pass out.I’ve been taking the mestinon but my eye refuses to budge. If I up the dose, I feel like its too much and my body shakes like crazy. My right eye lid looks bruised. I’m at the end of my tether with feeling this way.

I don’t think I’m depressed, I have none of my normal signs well pre undiagnosed MG signs, like sleeping in the day or waking ridiculuosly early or crying all the time. I don’t want to withdraw from people and the thought of leaving the house doesn’t fill me with dread. Its just a low mood, which I always get when I have a flare up, like now.

I’m just seriously fed up with not being able to do the things I used to. Just simple things like hoovering the stairs or changing the beds. Sometimes its more adventurous things like driving or taking the dogs out for a walk. I feel so trapped in this utterly useless body. I feel fine but when I go to do something it betrays me.

I will be completely honest some times I do think it would be easier if my life ceased.I wouldn’t have to face this torture, my husband wouldn’t have to worry about me all the time and could get on with a normal life. My parents wouldn’t have to worry about me from one day to the next.

That solution would be easy for me, but not those around me. It would have a bigger impact on their lives than I care to imagine. It would ruin their lives. I care too much about them to hurt them in that way. Plus I’m a coward and couldn’t do something that would hurt.

I have to say just because I think about it doesn’t mean I’m suicidal. It doesn’t consume my thoughts every minute of everyday. These thoughts come when I am bad like this, because without treatment I can’t see things ever getting better. I don’t want to spend the next 30-40 years living like this, a half life. The thought of it fills me with dread. So I do what I always do, limit myself to one days pity party and move on.

I think days and thoughts like this are pretty normal when you are suffering from a chronic illness, its just not many people care to admit they happen. People want you to stoic and cheerful in the face of adversity, but they’ve not walked a mile in your shoes. How can they judge without the experience of it? There is a pressure on those of us who live like this to continually pretend that we are ok, we even lie to other people that have the illness to say we are fine. Its just part of chronic illness that you don’t talk about it. You also worry that people will get bored if they ask you how are you? and your constant reply is crappy. You worry that this perceived negativity will push them away. So you dare not admit that ideally you would like to curl up in a ball in a darkened room and wait to get better. People dont understand that.

Tomorrow I will probably wake up and feel better about everything, I may still have ptosis and double vision, but my mood may have lifted. If it hasn’t I will distract myself and get myself out of it.

I have a date!

Oxford rang yesterday to inform me that they want me to come up on the 8th March for my hospital stay. So something different to look forward to and it will also help me give up the fags as no one will be there to wheel me out of the hospital grounds so that I can indulge in my filthy habit!

I’m absolutely terrified if truth be told. Its certainly not my idea of fun it is a necessary evil and thats the only way to look at it.

Hubby is concerned that whilst I’m gone he may fall off the dieting wagon. He gets very stressed when I’m in hospital and generally spends the day eating and smoking. He’s just won slimmer of the week again at his works slimming club, losing 10lb in two weeks. So he has a lot to lose in many ways if he falls off the wagon in my absence. He is already joking with his colleagues if he wins again next week he should get to keep the trophy – like with the world cup!

In preparation for my upcoming hospital stay I have done the truly british thing and treated myself to some new knickers! I adore Marks and Spencers Cotton briefs so have ordered 10 pairs. Along with some new secret support vests. Although I have a somewhat ample bust I can not no matter how hard I try get on with bras. In the summer I wear sloggi Bra tops or go “commando”. In the winter I wear my secret support vests. So much easier, especially now my fingers rarely do as they are told and wouldn’t manage a bra clasp.

I now just need to drag out my PJ’s and get them washed and ironed. My hospital bag is pretty much always on stand by as last year I just had too many trips to hospital. I’m going to speak to mother and see if she can get me some cheap night shirts from primark as well just incase they decide to do a Plasma Exchange whilst I am there. I will need the night shirts as basically a cannula is inserted into your groin for several days, so Pj’s are out.

I have been stocking up on things to do whilst in hospital. I have a word puzzle book and I have decided I would like to sort out my recipe book and transcribe all the recipes into a bigger better book, that isn’t covered in stains from where it has been repeatedly consulted whilst I am cooking. I need to find some good books as well to keep me occupied. I also love listening to the radio, so I will be taking a small digital radio with me so I can continue listening to Radio 7 during my stay.

Any others suggestions to help me while away the hours would be gratefully recieved! I will be keeping a diary whilst away so I can update my blog when I return.