Wow where do I start? I thought that losing Mum was bad enough, and I still miss her so very much, but I didn’t expect my health problems to also get worse. At the beginning of the year I was diagnosed with Facet Joint Atrophy which means that I struggle to walk very far. Then in early summer I had a major bleed in my eye which has taken away more of the visual field in my already bad eye. I then got diagnosed with Ménière’s Disease. There have been many weeks when I have stayed in the house too scares to go out in case I fall down or too tired because of my other conditions. But, with the help of my wonderful partner I managed a lovely trip to London and a trip to Dorset visiting a very close school friend. I’ve also had a day in Cambridge with two very close school friends and have had various trips to the pub/lounge bar. But when I’m on my own I feel lonely and sad and can’t find much motivation to do hardly anything. I need to focus my mind but it’s difficult to commit to anything with my health problems. BUT I want to focus on the positives. My draft novel is now 18,000 words, the Susie book is ready for editing and I’ve just accepted a place to study a History degree which has been a lifelong wish. So however bad things may seem it is possible to move forward. I’m not the best at doing this but I am trying!

When I posted my last blog in December I was full of optimism for the following year. Little did I know that my wonderful, lovely Mum would be diagnosed with lung cancer. Although I have done some lovely things this year, like a special Valentines Day in London, there was always an undercurrent of fear about Mum’s health. My worst fears were realised  when Mum passed away on August 20th 2017.  I so very much miss my Mum and I’m always trying to support my Dad, albeit at a distance, but as others have said to me it is still early days. In the last months I have frequently found myself getting up in the morning full of good intentions, but on the days that I’m on my own I’ve been wanting to crawl back under my duvet.  Not surprisingly my Chronic Fatigue Syndrome and gastroparesis have flared up and my diabetes feels like it has a mind of its own. I’ve withdrawn from people but I am trying to, as they say, “move forward”. One thing that has helped is writing a “Happiness Journal” where each day I try to note down some positives about the day. They may be as simple as having watched Cold Feet or more fun, like watching the musical Legally Blonde or practising the piano. The journal gives me something to look back on to highlight that there have been positives. Now I want to add to the journal by increasing my writing which I’ve been finding difficult to do. But today was a move forward with a section written for the Susie book and starting to write this blog again – and, of course, I will write about these in my Happiness Journal today.

Merry Christmas everyone. I’m looking forward to two weeks of complete relaxation but I’m also planning next year. I definitely want to embrace a more holistic lifestyle – not easy with my medical conditions and physical problems but I’m certainly going to give it a try. Therefore for the next few months these posts may be more frequent but shorter. I’m aiming to lose a pound a week, gradually increase my exercise via steps and, hopefully swimming, do more meditation/relaxation exercises and do my best to embrace Dry January (but not starting until January 2nd).  So expect lots of posts regarding this. But in the meantime I’m hoping for a wonderful Christmas holiday for me and for all of you.

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Oh well I tried studying BA English part-time. But it wasn’t for me although I guess that trying to studying English when I can only read with one eye was slightly mad. Add to that my other health conditions and it was a choice of study and no other life or enjoy life but don’t study. I did the former for my first degree and PhD. I wouldn’t change that for anything but my priorities have now changed. But I still haven’t given up!! Oh no I might keep needing to change paths but will keep going. So in January I will continue on my goal of writing novels. The Guardians of Ormaton Abbey will get finished! In the meantime my life is about fun, fun, fun and lots of drugs – aka by others as prescription medication, but not let’s spoil it with the detail. Well what fun I’ve had. A stay at the Randolph, including drinks in the Morse Bar and breakfast at The Ashmoleum Museum. VIPS tickets for one of David Essex’s farewell concerts, then a meet up with Paul Hollywood and Michele Roux Junior. Wow so good and so exciting. Then a much needed restful weekend of Mum and Dad visiting and babysitting the mad Labradoodle aka Chewbacca but in real life called Sammy. In between this I got my hair dramatically cut and transformed from brown/blonde to red – fitting the cliche of new life new hair. And what about the poms poms, well let’s just say that the green version in the photo is mine but, as always, if at first I don’t succeed then I will try again.

Since my last post I have actually started my BA (Hons) English studies on a part-time basis at the University of Northampton. I can’t belive that it is four weeks since I started, and I’ve learned a lot in that time. The most important thing that I’ve learnt so far is to have patience with the curve balls that my health throws at me. Examples include going to bed at night happily looking forward to class, then discovering that two of my conditions have flares up overnight, so my plans have to be altered. Although, fingers crossed, so far I’ve managed to attend all of my classes with some flexibility built in.  Another area that requires patience is getting used to the different pieces of equipment/software that I need to use because I can only read with one eye, and that eye is nowhere near perfect. I have been sorely tempted to throw some of the equipment at the wall when it hasn’t worked how I want it to, but instead I’ve just shouted at it and got very frustrated. I’m now quite proud of the tech skills that I’ve developed over the last four weeks so that I can really make the most of everything. OK a lot of people can just pick up a print book chapter and read it, but I’m pleased that I’ve speeded up the process so that I can get a chapter ready to read in less than 30 minutes. Kindle books are obviously my favourite because I don’t have to scan and format them.

i thought that I would struggle in class because I can’t just turn to a page to read in a book, but I think that my learning strategies for dealing with that are improving. One of the most important aspects for me is, time permitting, writing notes about the reading before the class so that I can try give my contributions by referring to my large font notes.

I’m absolutely loving my creative writing class, both receiving critiques about my own reading and reading the work of others (which they have kindly enlarged to twenty font for me to read). The biggest highlight so far followed me writing a 300 word piece for class in which I developed a character with a back story. My new university friend read it and said that she can’t wait to read the book based on this..I may have a busy summer writing after my May exam!!

Due to feeling unwell with viruses etc I’ve only managed to read one of the books on my summer reading list for BA English. On an average day after two hours reading, spread through the day,  I can’t manage anymore and that’s on “good” days. What am I letting myself in for? Am I thinking straight wanting to study with all of my health problems? Will I improve as I try to do a bit more day-by-day or should I withdraw before the course starts? I only have ten days to make a decision before I commit to high fees (I’m not eligible for a student loan). If I start the studying I’m not sure if I will be able to keep up, and if I do I may not have the energy to do anything else during term-term. As ABBA sang “I wonder, it’s frightening.” But if I don’t try it now I will never know and it could open up a new world to me. So, at this moment in time, I’m still planning to enrol on Sunday September 25th. Watch this space! Now time to continue reading my next book which is the Hound of the Baskervilles, buying my stationery and getting my clothes ready. It feels like I’m going back to school…

Well my life has changed unexpectedly.  I don’t want to say why but just as I thought that I’d got everything sorted the sand shifted again, and I’m left with most week days on my own. Well I say on my own, I’m very fortunate that I have good friends that I can speak to online and usually at least one day a week there will be someone for me to go and see, even if it is just the hairdresser. On good weeks it is friends that I’ve known for 30 years and others who know how to make mischief with me – you know who you are!!!  Also I’m very lucky that my partner is here in the evenings, weekends and when he is on holiday.  So I count my blessings. Now is the time to re-think what I will do with this spare time that I didn’t expect to have. Due to my health my life has to be flexible so I find it difficult to commit to going to something specific on the same day each week and what I can do on any day.  That does limit the options that I have available to me.  But I’m going to be positive and think about what I can do.  I have two books that I’ve started writing but haven’t got very far with so I hope to start moving them forward.  I have just begun a new short writing course to help kick start me back in the habit of writing on a regular basis – no pressure from them, they only 2000 words in the first week!! I’m glad that I like challenges. Alongside the writing I’m going to go back to embracing being a trainee domestic goddess. I say trainee because I’m not very good at housework!!! But I do like cooking and crafts and working on my vegetable garden. Plus, I’m starting to meditate and enjoy relaxation exercises. Also I can always go for a coffee with my Kindle as company.  I also want to find time to do things that I seem to never get round to, like putting all of my photos into photo albums.  I’ve tried desperately to find books on how to stop yourself from being lonely when dealing with fluctuating health, unable to commit to things when the majority of your good friends either work or live quite a distance away.  But I haven’t been able to find the books that help so I will carry on working out the answers myself.

Please don’t think that I’m writing this blog because I feel sorry for myself. Most of the time I don’t but I do get flipping frustrated with my body that doesn’t work as it should either physically or cognitively. Last week was a good week, for my body as it is now, but compared to the person that I was it was flipping hard work to do things that a lot of people take for granted. I said to someone that working at the computer for three hours, with lots of breaks during that time, was harder than when I used to happily spend ten hours working. On the days that I studied for three hours I wasn’t capable of doing anything else, my brain didn’t want to think and my body was exhausted, despite going to bed for ten hours every night plus lots of rest during the day.  I have thirteen different medications every day, some of them I need eight times a day. I have Gastroparesis which makes my type 1 diabetes extremely hard to control and it is hard work with ten plus finger prick blood tests a day and being told that the gastroparesis medication could stop my heart from suddenly working. But if I don’t have the medication the effects are awful. As it is I often feel nauseous and wake up with gripping stomach pain in the early hours of the morning. I have CFS/ME which makes me physically tired, my brain not function properly and is probably the cause of the hip and back pain that started around the time when the CFS/ME was diagnosed. I have neuropathy (nerve damage) in my feet which is now starting to cause transient pain in my feet. I also have eye problems and this week have two different eye appointments.

Although I’m only 47 at times I feel like an old lady.

BUT I won’t be defeated. I’m still trying to find the right route for myself so that I can enjoy life but also feel fulfilled. At the moment I’m trying studying but so far all I’m managing to do is feel like a zombie whilst getting further behind with my studies. I absolutely love volunteering for Guide Dogs but I feel frustrated when I can’t do as much for them as I would like or that my brain fog means that I forget something. I love my friends and family who provide great company and make me laugh and understand what I’m going through. I love the range of crafts that I’ve got to do and the recipes that I like to cook – I just need to find the energy and motivation to do them. I’ve done loads of great things in life and I’m determined to do more of them.

Written for everyone dealing with the frustrations of chronic illness.