What a Month!


Hi M.E.ers!

Well first of all, where the hell did that month go to? I can’t believe that the last proper piece I wrote was on 31st May, that’s the longest gap since I started the blog!

I am so sorry, I hope you didn’t think I was being rude, slacking off or taking you guys for granted because that is absolutely not the case. Where to start…

Well, I’m not sure if I’ve mentioned it before or not, (I don’t think I have) but around last September or October I committed to organising a huge 70th Birthday bash for my Father-in-Law and his twin sister.

We were all at my husband’s cousin’s birthday and as the nectar of the Gods flowed we came up with this idea that it’d be great if I put on this event for the whole extended family as a reason to get together for something happy. I think we had all been to more funerals than social gatherings over the previous couple of years and this seemed like a way of bringing back some of the joy and youth of family for everyone. And I think Mr M.E. (I’ll have to come up with a new name for him now that I know someone else is using it!) thought it would be a good happy project for me to tinker away at to keep me busy-ish and happy.

The budget was set, the plan was hatched and off I went. Tinker… plot… giggle… rub hands at own brilliance.

The Party, with a capital P was planned for 23rd June and I went all out to make it the event of the decade for the whole family. I hired an amazing venue, caterers, decorators, games machines company and a baker of the most amazing cakes! Everything was going great and as is typical with my Type A, hyper responsible, attention to detail nature, nothing was overlooked, everything was going to be perfect.

The budget spiralled out of all control but I was let off the hook for that after quite a serious chat with Mr M.E. and a promise to ‘be good’ for the next two years. All holidays and Christmases cancelled but it was to be totally worth it. Thank goodness for his kind, generous and generally yummy nature!

I had one or two minor panics about it all, I don’t mind telling you.

As anyone who has ever planned a big party or reception will tell you, try as you might to make sure everything is dealt with in plenty of time, details, meetings, phone calls and emails all still need to happen in the final few weeks before the event. Some suppliers are in such demand that they simply cannot think more than two or three weeks ahead and just deal with what’s immediately in front of them.

I had told all my suppliers that I have ME/CFS and begged them to let me rest in the run up by finalising everything at least a month before, but of course none of them understood and smiled wanly when I tried to explain….So I was still dealing with last minute details even in the week of the party itself. I was getting more and more tired in the run up to the event and even seriously said to Mr ME that I might not make it on the night. But he just couldn’t entertain the idea that I wouldn’t get to enjoy something I had worked so hard to put together by not going to it.

On the day of the party itself I went to meditate for half an hour after getting my hair done (which of course took twice as long as they said it would in a noisy hairdresser) and I promptly fell asleep. I was so tired before I even got there but I knew no one would know how bad I felt so I just pushed through. I know this is bad to say out loud OK, and some of you may be shocked enough to stop reading my work but if someone had offered me something ‘naughty’ to keep me awake, at that point I would have gratefully accepted it, such was my feeling of “eff, I am so exhausted, I don’t want to be here”.

As technically the ‘hostess’ of the party, I was ‘on’, buzzing round tables, attending to little glitches, ensuring the timing of cake cutting, food etc was adhered to so by 10pm I was almost delirious with fatigue. I know people must have thought I was tipsy at that point but I’m pretty sure I’d only had three drinks then. Again, I’d warned the venue that there would be a point in the night when I would seem like I couldn’t keep it together and understand/communicate with them but as wonderful and helpful as they were, I don’t think they got it.

That was the point at which I knew I either needed to go home and die quietly or start really hitting the alcohol to make it to the end. I did the second one. Of course, I don’t have a great tolerance for alcohol any more like most of us with ME/CFS but it is the only way I can get through that kind of exhaustion and pain.

The party was a great success, by the way. I had the venue turned into an indoor enchanted garden, with ivy and wisteria hanging from the central lighting, bay trees with twinkling lights set amongst the tables, which had little trees with birds and butterflies on them. There was faux topiary dotted around every corner. There was a sweetie and popcorn buffet along with an awesome hot buffet, a photo booth, and games including a giant Scalextric and a life-sized game of operation. Everyone raved about it and the place was packed ‘abuzz’ all night. I’ve attached a couple of photos so you can see. I am pretty pleased with the results, if I do say so myself.

I got to rest on the Saturday, but, as my parents had driven over 400 miles to be there and were going home on the Monday, I needed to drag myself out and put on a brave face on the Sunday. I didn’t want to let them down or seem rude or ungrateful after they had come so far and my dad outdid himself in terms of how late he stayed. I’ve generally gotten to the point in my diagnosis where I don’t usually make myself do things that I know will lengthen a crash or cause extra suffering but when it comes to my mum and dad there is still a visceral need to please and a fear that they think I’m ‘lazy’. That Sunday was one of the hardest things I’ve had to do in a long while but I would have felt rotten if I’d not seen them before they left.

My knees, ankles and feet did not stop throbbing for three days. My feet were so tender that I didn’t even want to put socks on, never mind shoes.

I used my whole month’s supply of dihydrocodeine in about two and a half weeks leading up to and after the party. I’m skating by on neurofen and lots of antacids now until I pick up my next prescription…. I know I could ask for extra but I’ll be damned if I come to rely on opiates to live my life. I’m so para about the ‘opioid crisis’ I keep reading about in the news.

I’ve just entered week two of recovery and I’m doing OK. I definitely feel better than last week and touch wood I’ve not had a lot of brain fog. Just a really bad upset tummy, headaches, exhaustion, lead limbs, pain and mad cravings for carbs, which I’ve mostly resisted but not entirely (grins).

So that’s it then, I hear you say…… well not quite….During this busiest of months, something else happened. I got an unsolicited email from a lady on the 2nd June, a mere three weeks before the party, asking me to help with her bookkeeping. It sure did put some extra pressure on but I’ve got such great people supporting me, like Rachel, my mentor, that I couldn’t ignore it.

I’ve not properly spoken about this yet but it is on my list of topics to write about, so I will go into more detail in another post but basically, it is my ambition (as I’ve discovered over the last six years that employers are shady as F) to work from home by starting my own small bookkeeping business. I had not yet started as I really wasn’t sure I was ready and didn’t have a lot of confidence about how the heck to start but I had mentioned this ambition to a lovely woman, called Fiona, that I’d met at the Millions Missing Protest way back on the 12th May (International M.E. Day).

We’d had a great chat and she suggested I become an editor or proof reader for financial publications at home. I don’t know if you remember, but I wrote off to the company Chiappe, as she’d suggested and said I would get back to you all about how it worked out? I figured, nothing ventured, nothing gained, financial diversity in a gig economy and all that but I never did hear back from them so there was nothing to report.

Well anyway, I’d told Fiona at that time that I was ever so slowly working toward my own plan to regain some dignity, get off benefits and out of the poverty trap into some semblance of financial independence and she must have taken it on board because the lady who contacted me was a colleague of hers.

Much the same as the Chiappe thing, I took it as a sign from the universe, trying to push me in the right direction and I grabbed the opportunity to kind of start my own small business. I haven’t got any paying work yet and there’s definitely some stuff I need to work out but I inch ever forward my fabby M.E.ers

To be continued…


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