Today’s blog post was going to be about last week’s appointment with the neurosurgeon however events have overtaken me. Its part written but a long way off being finished. I have photo’s and everything to share.
Tuesday afternoon I received a phone call from the registrar to say they wanted to admit me at 9am the following day. It’s 4am Wednesday 29th June (2016) so I am quickly banging out a blog post!
The plan is that Thursday I will have an MRI and then Friday an Epidural Blood Patch, this will hopefully stem the CSF leak.
This piece was written ready for last week’s blog post, on a day where I had a couple of hours of relief from the pain. I always like to take some time away from a blog post before editing it. When the time came to take a second look I was too sick to do it. This week I have been a bundle of nerves as I am off to see the neurologist later on this morning. By the time you read this on Thursday 23rd June that will have been yesterday!
This week has been a total crapfest bar one day, a week ago Wednesday when a friend popped over. It’s a couple of hours like that which keep me going even if it means collapsing into bed immediately after they leave. I basically went to bed on Wednesday afternoon and then barely left it after. Sleeping the majority of the weekend away as I was so worn out from the pain.
Photograph courtesy of Heather Rowe
I will be honest I have been playing fast and loose with this of late, pushing back against the headache so that I may get a few more hours out of bed. This never ends well as it exacerbates the pain and leaves me worse off than I would have been if I had just laid down when the pain started. Denial has always been one of my biggest issues.
Even 9 years on I still can't get my head around the fact that I cannot do the things I once did. It is as if my brain refuses to accept that things have changed and will never be the same again. This causes problems for me with people understanding how disabled I actually am because I continually downplay the crapfest which is my life and I “don’t look sick”. Although with this suspected CSF leak I am starting to look the part when the pain is unbearable.
Due to my continual denial to the outside world, people who haven’t read my blog (mainly medical professionals), are completely clueless to how much my life is affected and consequently I have got to the stage where I am begging for help and it seems like no one is actually listening. I have emailed the people at my local council for help because I need equipment such as a commode for my bedroom for when the pain is so bad it’s a struggle to get to the toilet, a table that can go over my bed, just basic things really that would make the world of difference in a limited situation. Asking for help goes completely against my nature, so this year I have decided it is time to go big or go home.
The other day I caught myself thinking "I'd love to go for a run", which is hilarious as there are times I struggle to walk from one sofa to the next. My brain refuses to admit defeat.
I also asked the local council about a wheelchair assessment, I had one back in 2008 but due (again) to the fact I was in complete denial about how awful things were I refused to go back. All my chariots have been bought on-line mainly from Amazon however they are no longer suitable and although Amazon sell the type of wheelchair I am after, I don’t have the means to buy it myself. Hence the Go Fund Me - Help me walk the dogs again campaign. I am happy to report that we have raised over £900 now. Most of that has been raised through hubby being sponsored to have his back waxed. I am a little worried though as earlier today I ripped a plaster off his arm (he’d had a blood test) and I thought he was going to cry.
**Since this post was written we have raised £1,300.
I have been truly amazed by people's generosity and I know we still have a long way to go but we have made magnificent headway in less than 30 days. The trick now will be to keep the momentum up and we have been discussing ways in which we can raise more money.
So despite the week being mainly one filled with quite severe pain and vomiting, there have been some truly wonderful moments in it as well.
I got read the riot act last week on the first day of Jay’s (hubby’s) holiday. I was informed I was not allowed to use the word “sorry”. You see I use that word an awful lot, not a day goes by when I don’t find myself apologising. My husband can’t stand the fact that I am continually apologising for being sick, he was determined that I wasn't going to apologise for being chronically ill for the next nine days.
To be honest when he started on his rant I was a bit concerned about what he was going to say. He is my rock, my best friend and soul mate. What had I done to make him start a rant first thing on a Sunday morning? You see we don’t really full on row very often and when we do it is normally started by me. We bitch and bicker, with some light-hearted banter thrown in for good measure, so when he started up, I wondered what the hell was coming next. I know to some I am a millstone around his neck, destroying his life. They would have walked away and filed for divorce if they had found themselves with a sick spouse. You would be surprised at how many of those people are around. I have read numerous articles based on studies that have shown a husband is much more likely to leave a sick spouse than the other way around.
I almost burst out laughing when he said “I don’t want you to apologise for anything whilst I am off. If you need to lie down, you go and lie down, if you need to spend the day in bed, you do that. I just don’t want you saying sorry. You’re sick and you can’t help that, so please don’t say sorry because it breaks my heart that you feel the need to have to say that.” I was very touched by him saying this. Getting sick has left me feeling very insecure, unworthy and basically less of a fully functioning human being. I feel guilty all the time regarding the stress I cause him and the fact that our dreams for the future have been shattered. It would be very understandable if he felt resentment or frustration due to the situation we find ourselves in but he never blames me.
I have been apologising much more than normal of late. There is barely a day that goes by when I am not having to go to bed for the night at 18:00, ridiculously early for a grown up. It means that when he is working we spend very little time together, which isn't ideal. On his days off I have also had to have a lie down part way through the day, or ask for numerous hot water bottles to be filled whilst I lie head in hands because my head feels like it is about to explode. It makes normal life practically impossible but at the moment it is the only way I can manage.
I don’t just find myself apologising to him, I apologise to everyone continually. It seems I have a guilty conscience about everything, missing phone calls, forgetting to reply to text messages and generally being really crap at keeping in contact with people. I am lucky that my friends don’t take it personally they know that my brain is fried at the moment. They know currently that there are more bad days than good. So if they don’t hear from me properly for a few days, I am trying to get my shit together so I have the energy for a proper conversation.
I have never been very good at pacing myself, when hubby is home I will push myself to the limit. Before this suspected cerebrospinal fluid leak started I was never very good at having enforced rest periods. Now there is no choice as to when I have to lie flat and do nothing because the pain won’t let me push on through. I know after a couple of hours I can get going again but the amount of time I can be upright declines with each period of intense pain. By the end of the day I am lucky if I can sit upright for more than 30 minutes before I have to admit defeat. I used to be able to just lie down on the sofa but now things have progressed to the point where being completely flat lying in bed relieves the pain. You feel so stupid after a while because the head pain has gone but the minute you sit up its back and on occasions it can feel like someone is attacking you with an ice pick being plunged into the back of your skull.
Thankfully over his time off I have had a few good days, where we have been able to catch up on some TV shows that we like watching together. I have also been able to spend some time with my nephews and my parents, thank goodness for reclining chairs. Without them I would have had to give up and go home after an hour. I realise now I should have been more grateful for what I had because I am now very thankful indeed for the small amount of time I can sit upright like a normal person. We have enjoyed each others company whilst he has been on holiday and I know when he returns to work for the first few days I will be dreadfully lonely.
Whilst he has been off work we have been discussing various schemes to help raise money for my go fund me campaign - Help me walk the dogs again. Hubby has volunteered to have his back waxed in the hope enough people will sponsor him so that he can raise a couple of hundred quid. He had his leg waxed a few weeks ago to raise money for his company’s charity of the year and he nearly brought the store to a complete standstill with his cries of pain. You see he is a hairy boy and he knows how very much that this will hurt. If I had any doubts that he truly loves me regardless of my ill-health, I have none now.
Hairy Boy!
When the event takes place I will post a video as part of my blog. We have yet to organise a date for this to take place but it will probably be next month. We do have the beautician sorted for it though who is doing it free of charge.
We talk continually about the day that I will finally be able to accompany him whilst he walks the dogs. We know we are a long way away from raising all the money we need even with adding all our savings into the mix. Currently this dream is the one thing that keeps me going. It may seem strange that we are trying to get me some mobility equipment whilst I am currently struggling to spend much time upright but I have to live in hope that the situation will be resolved and that I will be able to get outside and enjoy myself. No matter how long it takes to raise the money or get my suspected leak fixed.
Jay has been exceptionally busy through his holiday. He has painted our porch (more of an overhang), fallen off a ladder whilst painting said porch, bringing all our neighbours out of their houses to check he was OK. Thankfully he was. With my mobility issues I was the last person to the scene and again I felt terribly guilty. What if he had really hurt himself, how long would he have been there lying on the ground without me? I know how much he hates heights so he was very brave to get on the ladder. Hence there will be no abseiling, skydiving or bungee jumping to raise money for me. I'm just not that cruel….or am I? Although bless him he is considering running a half marathon again and he loathes running.
We have also spent quite a bit of time sorting out the garden. It is only small but we really wanted it to look pretty this year with flowering plants that would be around all year and not die as soon as it gets cold. We have planted lots of flowering herbs and at the last count the garden contained close to 40 pots / hanging baskets. We are very proud of the garden
Curry Plant, Mint behind and Hyssop in top left hand corner.
I have a bed which I can lie on out in the garden so it is nice for me to be able to spend time out there increasing my vitamin D and get some fresh air after being cooped up all over winter.
Trailing Rosemary and Trailing Indian Mint.
Chives
Of course on several occasions during the week I have said sorry. Sorry that I was going to bed as my head was hurting, sorry I was going to bed for the night at 4pm, Sorry that we hadn't done the things we had planned. I love him for telling me not to say the s word. He knows that none of this is my fault but I can’t help feeling I am to blame. We have so much pinned to this appointment on 22nd June, we just don’t want to be fobbed off or discharged with no clear way forward. I don’t want to have to say Sorry for a wasted journey, sorry that you have been so stressed out.
I am glad he read me the riot act on the first day of his holiday, it assured me that he knows how guilty this situation is making me feel. That he knows me so well, that he knows that I will soldier on until I collapse rather than feel like I have let him down (not that he has ever said that or that I have done it). We aren't a couple that professes our undying love all over social media, after 19 years together, if we don’t know that we love each other it is a bit of a poor show. We tell each other all the time how very much we love each other. So although he already knows this I want to say - “I love you Mr Morris” and “Thank you” xxx
Sorry I haven’t written to you, you must be feeling left out. For the last few years one of my first blog posts in January has been me begging for the coming year to cut me a bit of slack. I didn’t bother this year as I really couldn’t see how things could get any worse than they already were. What an utter fuck up that was! Someone in the cosmos really has it in for me. 2016 was supposed to be my year, new consultant, new approaches, things were going to turn the corner. They turned the corner alright and then went up shit creek without a paddle. Silly me.
I am painfully (excuse the pun) aware that my blog hasn’t exactly been a barrel of laughs of late. It’s difficult to find amusing anecdotes when it feels like your life is falling apart. I still laugh, do things I enjoy but the time spent doing them is less. Please hang on in there as you will laugh when you watch the video clip later in my post. It isn’t all doom and gloom….promise.
I am finding it difficult to come to terms with this new turn of events. In all honesty if I could shut myself away, at this moment in time I would. It isn't depression before any amatuer psychologists attempt to diagnose me. I am back in the five stages of grief, mourning for the life I had before, not before, before, as in pre 2007, just to go back to 2015 levels would be absolutely fine with me. And I moaned a lot then because I thought I had it bad. You don’t realise what precious little you have until it’s snatched away from you.
The last few days have been utterly horrific. Just when you think the pain can’t get any worse it ramps up a gear. The nausea and vomiting leave you clinging onto the toilet bowl, too exhausted to cry and just wishing that it would stop. I sometimes, when it’s like this, wonder how the hell I will get through it the next time it happens and then I do. The 22nd June can’t come soon enough but at the same time I know it is just another small step on this journey, which could go on for many more months before anything is done. I have found out through the grapevine that all spinal surgeries of which an epidural blood patch is one have been stopped for the next two years at the hospital I have been referred to. They are so behind on their planned spinal surgeries that they have closed their lists to new referrals. I am so screwed.
So here I am 2016, it is coming up to 1am and I am wide awake. Another night of insomnia beckons. I thought I had cracked the insomnia last year but it’s back with a bang. Insomnia for me is wide awake most of the night. If I am very lucky I will get a couple of hours sleep between 4-7am. The worst nights are when I sleep heavily for an hour or two and then spend the rest of the night awake. I really feel robbed then. Tonight is how it’s been at least once a week since this pain started.
Due to the extreme (and I am not being dramatic as there have been times this week I would have willingly cut my head off) increase in pain, I have had to increase the amount of morphine I take, particularly oramorph. If I can take the medication early enough and not try to soldier on (which I do a lot) I can get on top of the pain. The side effect I suffer with because of the increased dose is insomnia. So I have a choice, less pain and no sleep or some sleep and lots of pain. Tonight pain won and I took the extra morphine.
So I am downstairs on the sofa, speaking quietly into my chromebook so that it can take all my rapid thoughts down. Because the other side effects I suffer with is what I call the morphine itches, so literally every part of my body is itchy and I will scratch myself until I bleed and I get hyper. I can only imagine this state of hyperactivity (which is a bitch when you can’t move around) is comparable when someone takes speed (amphetamine) my thoughts race at a million miles an hour and I fidget incessantly. I just can't settle because my brain is trying to unlock the secrets of the universe. If I hear the Unicef Indian health campaign advert one more time on BBC World Service ( - please watch the video as it is a catchy little ear worm that you will find yourself singing at all hours.
I will lose the will to live lol! Although I have to admit with the video, the song is even better. That is one side effect that I do not suffer with, my poo’s go quite happily to the loo. Which always amazes my health care professionals, I should be shitting bricks apparently. It is only codeine that constipate's me, just thought whilst we are sharing….
Jay (hubby) has caught me singing the Poo to the Loo song a couple of times and I am sure he thinks I am slowly losing it.
I have reduced the amount of time I spend on the internet quite considerably. I now dip in and out, I have very little patience for people and I seem to be taking things quite personally. 2016 you have made me quite an angry person this year and I am not enjoying it. I try to support my online friends as much as I can but when the head pain is bad I get very light-sensitive so spend a lot of time wearing tinted lenses to take the edge off the glare from the screen. If I don’t I find I get pain deep inside my eye. Plus when I am in pain I can be a right grump. People don’t want me to be moaning and griping, you have to be a brave little soldier, otherwise you are letting the side down.
2016 has been quite an isolating experience, I spend a lot of my time dreaming of going away and spending some time in Scotland in the middle of nowhere. It is my happy place. I have always loved the countryside of the highlands and spent quite a bit of time in Scotland when I was a child. It holds very fond memories for me. I think this longing for Scotland is probably a longing for change. I can cope being alone that isn’t an issue, I have never exactly been a social butterfly, I have a small circle of close friends but really I don’t let anyone in. Someone I worked with years ago told me “I have never known anyone as intensely private as you are. You never talk about yourself.” I find this hysterically funny now I have a blog as it is the one self-indulgent thing I do. It’s my diary, my confidant but even then I don’t fully express how I feel. I write what I think is acceptable to others because it is true, I don’t let people in.
My aims at the start of 2016 were to keep blogging (tick), lose some weight (as always), submit some articles to various online publications (not happened, probably should be moved to bucket list), start planning for the future, hubby and I have talked a lot about a holiday we would like to have in the future. We would really like to do the Highlands and Islands of Scotland over three weeks, so I could have lots of rests in between activities. In all the years before now I don’t think I had really thought about the future at all. I think I had become acutely aware of how quickly things can change and no longer saw the point in making plans. Now I realise that hopes and dreams are what keep you going.
So 2016 we are rapidly approaching the halfway mark and I am sure there are lots more that you want to give me. I am ready for you (well as ready as I can be). All I ask of you is that you leave my friends and family alone, that they have a better half of 2016. Spend all the time in the world throwing things my way, I will keep you busy but don’t make life hard for them. That is my one wish.
“Take the poo to the loo!” ha ha ha ha ha ha!
Because I am feeling evil I will leave you with this ear worm…..enjoy!
Quick update: I have had a couple of good days at long last! My go fund me campaign to purchase a new wheelchair and power trike attachment can be found here "Help me walk the dogs again". For more information about the campaign please read this blog post : Pipe Dreams.
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