The last post of 2016

So here we are the last post of 2016, in some ways the last year has flown by in other ways it has been a drag (endless days of head pain will do that to a girl). One thing I did learn this year, well actually I learnt quite a few things this year. One of them being that medical staff do not warn you of the laxative effect of a caffeine infusion. But enough of the toilet humour that I always manage to sink to!

 

This year I have learnt the power of friendship, that dreams can and do come true. On 26th May 2016 I published Pipe Dreams Part One http://wp.me/p4zBAs-hj  and discussed my wish to raise enough money to purchase a new wheelchair and power trike attachment so that I could go out with my husband when he walked the dogs on Woodbury Common. Never in my wildest dreams did I believe that I would achieve this just over 3 months. On September 9th 2016 I took delivery of a second hand wheelchair and Power Trike attachment which I talked about in Pipe Dreams Part two http://wp.me/p4zBAs-jD .

 

To achieve my dream hubby had his back waxed and raised well over £1,000. I am so proud of him for doing this as I have seen him both cry like a baby and swear like a trooper when having his legs waxed for BBC’s Children in Need, many moons ago. He is my hero and if you fancy watching the video’s of him being brave and getting it done you can see them here in my blog post The Things You Do For Love – http://wp.me/p4zBAs-iL

 

When I first got the Power Trike attachment I promised that there would be a video shortly something in which I have been remiss. Various things have got in the way of putting a video on line, health, getting used to driving it and on my last venture out falling out of it and hurting my back. This Christmas I decided that I would venture out with the dogs on their morning walk. So later than promised here is a short video with commentary provided by Mr Myasthenia Kid aka Mr Morris. 

 

I want to say thank you to everyone who raised the  money, Abbie Wilson who gave up her time and her beauty studio to wax Mr Myasthenia Kids back, my two fundraising helpers Sharon Ross and Imogen Clark. Without you all none of this would have been possible, thank you. I would also like to thank Emmey Lou for her invaluable help along with her husband Mike.
So this is the very last post of 2016, I feel sad that the year is over already, I feel like I need another run at it.

So I wish you all a very happy 2017, may your dreams come true, may your health improve and may you love those in your life with all your heart. See you in January 2017.

Advertisements

Broken

For the last few weeks I have been left wondering how you fix something that seems broken beyond repair? How do you move past the anger and pain? How do you get to a new normal? I am left scratching my head trying to work this all out. I have had to deal with so many broken things, body, mind and relationships that have fallen by the wayside. When do you say enough is enough?

Before anyone psychoanalyzes this one, hubby and I are fine, perfect in fact. This year he has provided me (as he always does) with unwavering support through this difficult year. I can’t thank him enough for that. There have been days where he must have been almost hysterical with fear because I was so sick but he stayed strong. He made sure I knew I could count on him when the chips were down and there aren’t many people these days that I could say that about.

For 9 years I have had to deal with a broken body (well since birth but it really raised its ugly head 9 years ago) and on the whole I am fine with that. Of course there are days when I ask “Why me?” or I think that I can’t possibly go on but I do. I can forgive myself those moments of weakness or perhaps vulnerability is a better word. Even though pain wise this year has been horrific I am still managing to do things to make myself happy and enjoy life. I think that is something to be proud of.

I have in the last nine years had to deal with many broken relationships. People I thought would be friends with forever have dropped by the wayside but not before treating me like crap. I should take some of the blame here, not because of ill-health but for allowing people to treat me that way. I am an incredibly loyal friend and will excuse bad behaviour up to a point. However at some point a line in the sand has to drawn, it just I can take a bloody age getting there. When I do though the fallout (pun intended) can be catastrophic, people don’t like being confronted with their bad behaviour. I am not for one instance say this believing I am perfect, I am not. When bringing up the subject I always say “I am sure there are things I must have done that have annoyed you”. I give them the opportunity to address issues so it’s not one-sided because if things are ever going to be put right the exchange has to be honest.

Maybe because by the time I deal with the situation there have been a series of events, such as not contacting me unless I contact them, not coming to see me (I can’t go to see them as I am virtually housebound although I would love to), being rude or overly critical etc, etc I have the examples to hand, they are on the back foot unprepared for the conversation? Because for so long I have let things slide and given them the benefit of the doubt. I know that something must’ve happened for them to change the way they have treated me. However from my side it seems the more I do for someone, the more they expect, then because I am forever trying to please them, I get taken for granted and the friendship gets abused. My inability to nip bad behaviour ( what else can you call it?) in the bud seems to give them the green light to walk all over me.

I hate confrontation with those who are close to me, I am too worried about hurting their feelings that I end up not expressing my own. I wonder if it is because of all the bullying I faced during my childhood that I don’t want to rock the boat and tell the person what they are doing is not ok? I can be loud, brash and seem to have endless self-confidence but really I am an anxious hot mess a lot of the time. I worry over stuff that shouldn’t be worried about, I worry late into the night about things that haven’t happened, I can get into a rut of worrying that can be a difficult cycle to break. I know it’s not healthy to be anxious or to be afraid of expressing what you want or need. Most of the time I am not worried about what I will say but what will happen once it’s been said, as the words can not be unsaid. I should however start putting myself first and starting from now that is exactly what I am doing. I will no longer have people riding roughshod over my feelings in an attempt to make themselves feel better.

At the moment I am only filled with anger, I know that is clouding my judgement. The extent of the anger only reinforces the hurt I have felt and the fact that I do care deeply about this friendship. If it had been anyone else they would have been told to go once this pattern of behaviour seemed to establish itself. I have asked myself the question over and over did I do something to deserve this? Have I ever done something to deserve this and does it make me a bad person if I cannot think of anything but the times I have bent over backwards and supported you?

In some cultures when an item is broken like a china bowl, they fill in the cracks and cover the repair with gold leaf, to make it unique and more beautiful than it was before. I wonder if that is possible with human relationships as I am not without hope on rare occasions.

So I find myself now in a situation where the conversation has been had but now I am unsure of where we go from here. It no longer feels the same which is something I never thought I would say. Do I concentrate on the good times which account for 98% of the time and ignore the 2%? Is it worth resuscitating, this hollow corpse of a friendship, which it has been for a while or now because apologies have been made do we forge a new relationship? I am unsure that I want to open myself up again to the risk of being hurt so badly, picked up again only to be dropped when something better comes along? Do I try to forget what has happened or do I forgive but never forget? Does shared history count for anything? Is I am sorry, enough?  When is it broken beyond repair?

The Fancy Dress Party

So last Saturday I let my hair down and enjoyed myself. I apologise to those of you who believe I should continually go around wearing sack cloth and ashes, never enjoying myself. I am suffering for enjoying myself? of course. Is the pain and suffering worth those few hours of fun? Hell yes. Will I be doing it again anytime soon? Not on your nelly.

I would just like to take this opportunity to say I am not paid or endorsing any of the products featured in this post. All products have either been birthday / Christmas presents or bought with my own money. 

This years joint birthday party was postponed due to my continued ill-health. Normally we hold a get together of our closest friends on the nearest Saturday night to our birthdays. This year it would have been Halloween, so before we had to postpone it we had decided this years party would be fancy dress.
The town that I live in, Exmouth in East Devon has a massive tradition of fancy dress on New Years Eve. Before I moved to Exmouth nearly 20 years ago, I had never heard of this tradition. I am ashamed to say I have never been out on the town in Exmouth on New Years Eve. When I lived in Plymouth, I only went out once on New Years Eve and I can’t say I enjoyed it. The pub was packed, we’d had to buy tickets (that irked me somewhat before attending) and it was no where near as much fun as I had been led to believe. I digress as usual, anyway Exmouthian’s like to don fancy dress at the drop of a hat, so I knew the fancy dress theme would go down well.
Initially I had decided to dress up as Dorothy from the Wizard of Oz. I actually own this costume as I used to wear it into work during Christmas week, which made work rather fun. During my time at work I have dressed as a Christmas pudding, a rag doll, an angel, a fairy and a farmer, just to name a few. However as the end of October approached I changed my mind on the Dorothy costume and decided for a laugh I would dress up as my husband, wearing his full work uniform. Luckily he was replacing his shirts, so I used an old one (so as not to cause any damage to his uniform) a pair of his work trousers that had a hole in the bum (carefully stitched up), his old stained work tie and a jacket that the button had been smashed when involved in an incident with a roll cage. So no actual real uniform was harmed in my use of it (just in case anyone from his work is reading this!).
The costume was the easy part, I would have to employ some skill in managing to give myself his famous five o’clock shadow. Now I know I have moaned about sprouting facial hair but believe me even if I had let that grow in the name of art it wouldn’t have been impressive enough to pass muster. Thank goodness for the Internet and Youtube. I had contacted a friend of ours who is mad keen on make up and who I blame solely for my latest obsession Mac Makeup, on how I was going to do a stubble effect. She pointed me in the direction of YouTube and there were countless videos on there about how to produce a designer stubble effect with face paint. After watching the video’s a couple of times I then went online to purchased black and white face paint along with an item called a stipple sponge.

A stipple sponge is a textured sponge that special effects makeup artists use to create stubble, beards, cuts and grazes. I will admit I was extremely lazy and didn’t bother to have a practice run on my make up which I should have done. All I did with the sponge was rub it on the black face paint and apply the sponge to the back of my hand to see what it created. Once I knew that I could apply the sponge quite lightly to get the desired effect I was reasonably happy I would be able to create the desired effect on Saturday night. The old me, pre-ill-health would have practiced the make up several times, I was low on energy leading up to the party and couldn’t spare a drop practicing.

On the night I applied my usual foundation and concealer as a base (to provide my skin with a barrier to the face paint, in case of an allergic reaction as I have very sensitive skin). I moisturised my skin well during the day, as I know it can dry out when I have applied foundation giving me a bit of a flaky appearance. Once the base was on I then had to darken and enlarge my eye brows using an angled brush. My husband has much darker and fuller eyebrows than my own, doing the stubble effect without making up my eyebrows would have looked ridiculous. So I thought in for a penny in for a pound and went for it. I then contoured my nose to give me an altered appearance. I just used a matt brown eyeshadow very lightly applied to the outside of my nose and blended it in. I then applied a grey / blue matt eyeshadow to my under eye area, my husband has darker skin there so I wanted to ensure that I had the same. I then used a matt light brown eyeshadow over my eyelid again blended in well. I used the eyeshadow right up to my false eyebrow. Then I took a deep breath and approached the application of the fake stubble. First I applied white face paint using a stipple sponge, once that was applied I went over it with the black face paint, again applying with a stipple sponge.

I am terrible at taking selfies! Also both eyebrows are darkened but the photo makes it look like I only did one.

I apologise for the poor quality of the photo, it was taken in the evening with insufficient lighting. With the picture below you can see my make up in the context of the full costume.

I would like to point out that is a cushion acting as my belly!

To recreate my husbands hair, which is far shorter than mine, I slicked it back using hair gel, whilst my hair was still wet. I used a very low setting on the hairdryer to “set” my hair. Once the outer hair was dry, I then applied dry shampoo to give it a grey look and concentrated it on the area where I wanted a white streak. Jay has had a white streak in the front of his hair for as long as I have known him which is 19 years next February. This was then coated with ample amounts of hairspray.

Once my hair was completed, it was an enforced rest period. Due to the amount of rest I needed this meant I was fully made up from 5pm with the party not starting properly until 8pm. I needed to get my pain under control as my back had been behaving really badly for a week prior to the party.

Jay dressed as Fox Mulder from the X-Files

 There is always one part of my body that likes to really play up before a big event. More often than not it is my back and it didn’t disappoint. Usually when I have back pain it is a trapped nerve caused by my shifting vertebrae, this pain was different and it is something I haven’t suffered from for many years. My back is continually going in and out of spasm. Any movement of my arms above shoulder height, so moving my arms so that my elbow is in line with my shoulders will set my back off. Standing still, not that it happens very often, also sends my back into spasm. Despite being maxed out on all my painkillers and muscle relaxants on Saturday, the pain was incredibly intense. For all of the party I had to sit with my electric heat mat on my back and all that did was take the edge off enough so I could enjoy myself.

I had sworn off alcohol for months leading up to the party because every time I had a drink (just a small glass of wine) it would induce the spins. It has been awful not being able to have the odd glass of wine or gin and tonic. I am not a massive drinker but I do like the odd one throughout the year. I know many people with Dysautonomia can’t drink as it exacerbates their symptoms, I can but the next day I will suffer with a racing heart and whilst drinking I will have problems with things like temperature control and I will become freezing cold. I do infrequently use a small amount of alcohol as additional pain relief when all else isn’t working. On Saturday night I tried a small amount of sangria and to my joy found that an hour later I didn’t have the spins, which has happened all summer long (so I stopped having any alcohol). I decided to then have a larger amount (half a glass) and I waited an hour to see if I got the spins and I didn’t, so I then decided that I would let my hair down and have a few drinks. It relaxed my back enough to reduce the pain. It’s now Monday morning and my back hasn’t gone into spasm. I am not prescribing alcohol as a cure or recommending anyone else do it. I certainly won’t be drinking again until Christmas, regardless of what my back does in the meantime.

Our guests made a supreme effort in their fancy dress costumes so I wanted to share them here:

The Christmas Elf

Beetlejuice

Snow White

The Joker and Harley Quinn

Grumpy Cat

The Cowboy

Immie and me (another terrible attempt at a selfie!)

We held a vote for the best costume of the night, embarrassingly I won but as we had bought a prize ( not expecting either of us to win) I gave the prize to K who came as the Joker. Not only did he apply fake tattoos, spray his hair green he removed his chest hair!!

Well done to The Joker, for winning best in show and thank you to everyone for dressing up for the party.

Even the alien got involved on the night.

Frankie decided to sit between Jay and I during the pub quiz. Hubby and I won for the third time in a row! I can’t take much credit as it was him who answered the most questions.

I was very surprised that the dogs didn’t get scared due to the fancy dress, I know some dogs can get funny about costumes. They did sulk when I got dressed in hubby’s uniform. They equate the uniform with going to work and on occasion my husband does work night shifts, also I wore a version of that uniform many moons ago. I am sure that for a moment there that they were convinced I was going off to work, which is weird as I haven’t been for 8 years.

 As you can see from the photo above, I have the tell tale sign of an electric heat wrap, the elastic belt squishing down my belly so the wrap is nice and close to my back. This is always my reserved chair during a party as it’s the closest one to a plug socket.

I am paying heavily for having fun as I always do. Long gone are the days when after a night out I could get up and carry on with normal life. Sunday morning I was woken up at 8am by the feeling that someone was stabbing me in the stomach with a knife. The pain was off the charts, I stumbled to the bathroom as I thought for a moment I would be sick, thankfully I wasn’t. The pain continued it was what I class as my 10/10 pain. I started to lose consciousness for a few seconds at a time however I managed to take my morning meds and some oramorph. I then passed out again and then lay in bed wondering if I should wake up Jay. I didn’t because I knew I had more chance waking the dead and I also knew he would call an ambulance. Eventually I went back to sleep but was woken again with the horrific stomach pain at 10:20am. Jay came into my room and got into bed beside me. I had to beg him not to make any movements that would rock the bed, as anything other than lying perfectly still was causing the pain to get worse. Then within 15 minutes the pain had disappeared, I was just left nursing a hangover.

During the evening the abdominal pain started up again, I took some buscopan and oramorph and went to bed. On Monday (the day of writing this) I have pain it’s probably 7 or 6 /10 so much less intense but I am acutely aware of the fact at any moment it could ramp back up again. I have decided to fast today and have only liquids. I can only sip them as taking on too much in one go makes the pain worse. I don’t know why it started up it hasn’t been this bad since 2013. I really hope I am not in for months and months of pain again.

I think this sleepy picture of Frankie sums the mood up perfectly and explains why he won’t leave my side.

 

My MRI

Today’s blog post will just be a quick one as it is Wednesday (tomorrow is publishing day) and for the last week I have been hammered by migraine after migraine.

They seem to have shifted now and I know that they have been caused by the stress of the situation I find myself in. Whilst the medical profession play hunt the possible tumour (benign) I find myself living in limbo, putting on a brave face for everyone around me when really I am shitting myself. I have a million “what if?” questions going around in my head and no one is able to give me any answers. 

My husband is also putting on a brave face but I know he is worried about me, he is losing his temper at the slightest provocation. He isn’t my normal hubby but someone who is struggling with his emotions. I hate the way my health problems screw him up. I feel dreadfully guilty and despite my reassurances that I am about 80% certain they will not find a tumour and the raised prolactin with be idiopathic (without a known cause) because that is the way my medical history plays, he can not help but worry. I understand that he is struggling and so am I. We struggle on together, supported by those that we love.

Last night I had my MRI scan, mine was the last one of the day at 19:10pm. I was unable to sleep the night before and ended up getting up at 1am. I did manage to have an hours nap late in the afternoon and actually felt a great deal calmer when we got to the hospital.

Everything went smoothly, the cannula for the contrast dye went in first time (practically unheard of but I know of a decent vein on the back of my right hand), I got the technician to give me a surgical glove filled with warm water to help the vein come up. The MRI itself was the longest one I have ever undergone and the platform that I was lying on was shaking with the sound of the machine as it took the images that they need. Halfway through I was injected with the contrast dye. For the next series of scans they checked I was ok and not having an allergic reaction to it. They did say that reactions to it were pretty rare but they had happened and that they were equipped to deal with it. The two staff dealing with me were exceptionally nice and made me feel relaxed which is always a bonus.

I really loath head MRI scans due to the fact your head is wedged with blocks to keep it still and then you have a plastic cage thing placed over the top which contains a mirror so that you can see the technicians doing the scan. Rarely during the MRI’s do I open my eyes, I can cope better when I have them closed. I get quite panicky when I open them. I don’t think it is claustrophobia, its more an issue with masks and things on my face. I had a major operation as a small child and I think a mask was placed on my face before they sent me off to sleep. I have had a weird reaction to certain hospital smells and stuff on my face ever since. I can’t even snorkel because having the mask over my eyes and the tube in my mouth makes me start to panic. I have no control over it, I feel like I can’t breathe (despite logically knowing I can) and I need to rip the stuff off my face and just move away from where it is taking place. Having my head strapped down, with the cage over my face provokes the same feelings.

I managed to focus myself on the music I was having played during the MRI. I went old skool with U2’s The Joshua Tree, this was the first CD I ever owned. I tried to keep control of my breathing all whilst clutching the emergency button as if my life depended on it. Over all I am pretty proud of how well I did, I was in the scanner for around 35- 45 minutes, which at the time seemed a lot longer.

The only drama we had last night was that the cannula site wouldn’t stop bleeding. We had made it from the X-ray department to the main hospital corridor when I felt something dripping down my fingers. A quick check proved my suspicions right and it was blood. It wasn’t a big deal but the gauze that I was using to apply pressure was now about as much use as a wet tissue. We headed back to the department, it was deserted as everyone was packing up to head home. We stumbled across another technician who was very helpful, giving me a great big pile of gauze and taping it onto my hand. I knew it would stop bleeding eventually and it was just more inconvenient that frightening. All that was needed was more pressure and to keep my hand up on my chest to help stop the bleeding.

We eventually got home after 9pm and I crawled into bed shortly after that. I am exhausted today and can see other than writing this post very little else happening. My results should be with my consultant in 5 days and with my gp within 20 days. Hopefully somewhere in between I shall find out if I have a tumour or not.

On a lighter note I would like to wish my mum a very happy 60th birthday. She has always been my blogs biggest supporter and I want to thank her for that. I hope you have a lovely day and I am looking forward to seeing you at the weekend. Love you xxx

Dear Party People

Dear Party People,

I want to say thank you from the bottom of my heart for coming to the annual summer BBQ hubby and I laid on last weekend. I know how busy all your lives are and it touches me deeply that twice a year you clear your diaries and ensure you attend. I know how hectic your lives can be and how easy it is to decide not to go to events. I really appreciate the effort you make to spend time with both me and hubby.

You guys probably don’t realise that this summers party was the only thing that has kept me going since my health took an unpredictable turn (again). There were some days over the last few months, I seriously wondered if I could cope with what my life had become. The party was the light at the end of the tunnel and your company was needed for that night, so that I could just be Rachel and not hubby’s disabled wife.

These parties give me something to look forward to, plan down to the last detail and try out new punch recipes. Even on the darkest day hubby could make me smile by telling me that one of you had said in passing how very much you were looking forward to it. 

We are very lucky to have such special friends, we have one that was taking part in a bike race the following day, who turned up straight from work in his uniform to make sure he saw us. One stayed until well past midnight despite being in a show jumping competition the following day. We had others who came before they went to work for their night shift or after they had finished on a late shift. Another special young lady spent the first 4 hours of her 18th birthday celebration with us. My closest friend despite being in agony with a back injury came (and spent more time than she should have with the pain being etched on her face). It takes a lot of effort to do this and I thank you for it.

Yes I am now exhausted and hubby is in the midst of a two-day hangover. It will take me weeks to get over that one night. It was worth it just to spend time with you all and just be me, not my condition. Most of the time when I see people it is because I have a medical appointment. There, I am no longer a person but a long list of medical complaints. To be seen as more than that for just a small amount of time is incredibly freeing. I feel in those hours almost normal again. I don’t mind being exhausted when I have done something I have wanted to do, it’s when I am exhausted for no reason I get wound up. It’s the kind of exhaustion that no amount of sleep will cure.

Unfortunately my mask slipped during the night and a couple of you saw my expression change. One of you asked if I was alright, you thought I was angry or pissed off about something, I answered truthfully I had forgotten to take my night-time medication and I was now two hours without painkillers in my system. I corrected it straight away, what you will never know is that it will now take me a few days to get my pain levels back under control. It’s not a case of popping my pills and everything being ok. Those pills have to be absorbed by a stomach that sometimes likes to go very slowly. I would be without medication in my system not for just two hours but anything up to six depending on how my stomach decided to play it. Luckily I also have oramorph that I can top myself up with but it’s not the same dose as my standard morphine. 

I love the way no one bats an eyelid when I have a hot water bottle shoved down the back of my jeans on a warm summer’s night. During previous parties I have sat with a heat wrap on my back. I do not shove it in your faces, I am quite discreet yet when my friends get up for a drink they will ask me if my hot water bottle needs refilled. So many people chose to ignore the fact that I am sick and whilst my friends may not understand what is wrong with me, they will show me simple kindnesses like that which make me realise they care. Small things like this go a long way.

One of the new people to be invited to our get togethers ( we have a small group that are always invited) asked me on Saturday night why I go to so much trouble to throw these parties. I told her it is a thank you to those who come and visit me or to say thank you to those who look out for my husband. My hubby, as regular readers of my blog will know, suffers with anxiety and depression. He had these conditions long before I got sick but as those of you with chronic health conditions will know, the stress we can cause our loved ones often leads them to have mental health issues or exacerbate the problems they already have. As a carer (which hubby is) it is important that you have support from your own wider family and friends. My husband is very lucky that he has a very good group of friends who really look after him. If they think he is stressed (more than normal) or just generally not himself they will contact me. Our party is our way of saying thank you to everyone who provides us support as a couple as well as individually. We never take your friendship for granted, we hope you know that.

I always think it is the sign of a good party when your guests are asking during the evening when the next one will be held. The date is already set in the calendar and again it gives me something to look forward to. I think in an alternate universe I would have been an events planner or wedding planner. There is nothing I like more than working my way through a list and having an event go like clock work. I pride myself on the fact that despite all the barriers and complications that are thrown my way I can still throw a decent party. However I shall let you into a little secret on Saturday morning when I woke up at 6am I wasn’t in the party mood. In fact if everyone had rung and said they weren’t coming I would have happily spent the day in bed. I just had no motivation and felt quite awful. Thankfully as the day progressed I got into the swing of things. Just as well as there was no backing out now.

Behind the scenes before most of you arrived, we had the usual drama of lighting the BBQ, why we have such problems I have no idea. The matches to light the firelighters were useless and kept snapping. Every time a match was struck a gust of wind came from nowhere and blew the bloody thing out. Things got a little heated between hubby and I, unfortunately for about half an hour we were the only thing generating heat. Eventually it was lit and we had managed to do it without a full-blown argument most unusual for us. Things usually get quite tense (it’s me getting stressed) the day of a get together so it was nice that I was chilled out for a change!

There were no other dramas during the party preparation period. The list of jobs had been achieved and I adopted the mindset that you were all here to spend time with hubby and myself, not inspect the house. I know many of you tell me this time and time again but I have become cleanliness obsessed since getting sick and feel that I will be judged if the house is a state when you arrive. I know it’s not you guys, it is me. I thank you for helping me see that you don’t care about how clean and tidy the house is. You would rather spend time with me when I am feeling good, instead of shattered because I have pushed myself too hard.

I apologise most sincerely to those of you who made it through to the bitter end only to be bored to death by hubby’s ramblings about American football. I wish all of you could have heard him singing, in his Frank Sinatra way!

 

Although I am still in recovery mode from the party, it has lifted my spirits immeasurably, better than any medication could. So I just want to say thank you for coming and thank you for being our friends.

Rach xx 

Socialising and chronic illness

IMG_7135033805080

When you are chronically sick socialising can take a back seat. Either because you are too sick to visit friends or too ill to have them visit. Social networking sites can be a great way to catch up with people but it will never replace the joy that is felt when mixing with real people.

 

For those of you who follow my antics on my “The Myasthenia kid” page on facebook between blog posts you will be well aware that I am currently getting over some serious socialising. Last Saturday night (7th June 2014) my husband and I held a house party. Nothing too raucous, just 9 friends over for a bbq and some booze. We had planned this party for a couple of months and called it our “40 1/2 birthday party” as a bit of a laugh.

 

My husband managed to get the day of the party off work and basically did all the cleaning and prep work for the party to ensure that I rested as much as possible during the day so that I could enjoy myself during the evening.

 

The insomnia gods were not on my side last week, two nights were spent without sleep one of them being the night before the party. Due to the bad storm in the early hours of Saturday morning, even without the insomnia I wouldn’t have slept as my three hounds are absolutely terrified of thunder and lightening.I did try to get some sleep once the storm had passed but it wasn’t to be, I managed to go 24 hours without sleep.

 

How I got through the party I will never know. If it had involved leaving the house at all, I would have in all honesty cancelled. Not only had I gone without sleep but over the last week my bowel adhesions have started to kick off and on Saturday my stomach started to bloat with gastroparesis. It doesn’t make for a glamourous look and by 1030pm I had changed into my yoga pants, snuggle top and a pair of slippers. I know how to rock the party look.

 

My guests were brilliant, they may not know or understand what is wrong with me – I display no outward signs, like many others with an invisible illness but they all pitched in getting their own drinks, tidying up their plates and rubbish and telling me off when they felt I was doing too much. Thats the kind of guest I like at my party ones who help and don’t sit back expecting to be waited on hand and foot, purely because these days I just cant do that. No one said a word when I changed into my casual gear after looking so glam, all they want is for me to enjoy myself and relax in their company. Friends like that don’t come into your life too often! 

 

What my friends won’t see is the length of time it will take me to recover from the party. It could take weeks or even months such is the severity of the arse kicking my body will give me for enjoying myself. Much of yesterday was spent asleep. Today so far has been spent lying on the sofa. Luckily hubby has a late start today and hes done all the household jobs he could fit in before he left for work. I am thankful for his late start today even if it means he wont get home until after 10pm because it means I can lie in bed all day and not feel guilty for not spending time with him. The guilt I feel is enormous when I spend time away from him, in bed when he is home.

 

In preparation for the party I ensured Mondays blog post had been completed the week before. I naively thought I would be ok after the party (I never seem to learn) to write Thursdays post ( today’s post) during the week. I feel so awful I have scrambled together this post to ensure something is published whilst I recover!

 

Every part of my body hurts and on Saturday night it was no different such is the consummate professionals performance. I quietly topped up my painkillers on a trip to the loo, I injected my octreotide without drama, my only concern being I was wearing a white top and if it bled ( as it sometimes does) I may have to explain the stain. The only sign that I was flagging was getting changed out of my party gear and the wedge shoes that I swear were crafted by the devil himself. Even sitting down those shoes were killing my feet! I am a fashion victim and theres not a woman in the world who hasn’t endured pain to look good!

 

At least I have my shellac nails to remind me of what a good time I had. On the morning of the party I treated myself to a manicure and pedicure, partly because I wanted to look nice and partly as a way to stop me using up too much energy panicking that the house was tidy for the party. It did take up a lot of energy and by the time my toenails had been painted my legs were shaking with fatigue caused by holding them in the same position. Its silly things like this that remind you how sick you really are no matter how many times you try to convince yourself and the outside world that you aren’t.

 

I love socialising and seeing friends, my body doesn’t and that’s the choice I make. To put up with my body wreaking its revenge on me for trying to be “normal” for once. Sometimes it feels like too higher price but I will never give up.

 Frankie feeling a bit like me after the party!

20140609_111211  

A quick update : Tuesday 10th June, I have now developed cellulitis in my right hand, first finger so I am back on antibiotics. Having spoken to the dr she thinks my immune system is very low at the moment and hence why I am struggling to get rid of the cellulitis. I am back on antibiotics and now have a skin lotion that is antibacterial to apply three times a day. If I am honest I am feeling a bit sorry for myself!

IMG_20140611_084825