So plans were set and a suitable days weather had been forecast so Wednesday was the day. On the morning of the trip I got up as usual at 6.00.a.m., distributed the necessary medication and prepared breakfast for Julie. So on with the preparations, sandwiches for four made, gluten free bread for Julie of course, eggs boiled, tomatoes, spring onions ( a favourite of mine ) and celery all washed to get rid of any pesticides, flask filled with filtered water and a flask of Rooibos Tea ( caffeine free and low in tannins) all prepared. Chilled beers and soft drinks taken from the fridge and all packed into two large cool bags.
Julie eventually got ready and off to my parents we went, all going to plan except the weather was very dull, but at least it was dry. Onto the M6 motorway then the M54 past Telford making good time even the weather was brightening up, things looking good. " How long you say you’ve got off work?" asked my father, the first of many similar questions I would get used to on our day out together, " just the one week " I patiently replied.
Into Wales we travelled , clouding up and starting to rain " have you got your suntan cream on mother? " I joked , " no" she replied "just my nivea cream", never used anything else and swears by it .
For those of you not familiar with our destination, Barmouth is on the Welsh coast within the Snowdonia National Park, a beautiful part of the world surrounded by some memorable high mountain peaks. One of the mountains, Cadair Idris is one of our favourites and in better times scaled on a nunber of occasions by Julie and myself. We have seen some breath taking views off the summit of Cadair Idris of Barmouth in the distance.
Now the things about mountains they love to attract the cloud and the rain and today was no exception. Oh dear I’m thinking total wash out, but as we descended from the peaks near Dinas Mawddwy the cloud started to break and the rain stopped, maybe not going to be a total wash out after all.
We arrived at the car park just before 1.00.p.m. and the decision had to be made do we eat in the car waiting for it to brighten further or should we risk it and head for the beach? Well I like taking the odd risk so " come on lets eat on the beach" I suggested. " Not a good idea" my father muttered, so the decision had been taken, the beach it was.
I was keen to get on the beach, with folded chairs under my arms mom and dad carrying the cool bags and poor Julie at this point, having spent two and a half hours in the car, was struggling to carry herself to the beach. She always feels better if she lies flat this is another symptom of CFS / ME. Did you know that blood circulates more slowly with people suffering from CFS / ME when standing or sitting upright only 5 litres per minute compared to 7 litres per minute for non sufferers. It all makes sense, less blood flow means less oxygen which means less energy.
I located a spot in front of some large sand dunes which I believed would afford us some shelter and set the chairs and blanket out. " Not a good idea" father muttered once again, I was also beginning to think this was not a good idea when the wind picked up and blasted us with sand. "We'll get sand in the sandwiches and beer " father muttered, " Come on sit down and enjoy the fresh air" I replied. " I should have brought my sheepskin jacket" was his next little contribution whilst at the sametime pulling a face.
You had to be there but it was one of those moments that just made you laugh, I don’t think I've seen my mother laugh so much in a couple of years. Julie was laughing away on the blanket and even my father could see the funny side of things and began joining in the laughter, precious just a precious moment to see all around laughing away.
I took Julie arm in arm very slowly down to the waters edge and watched a few bravehearts playing in the surf. I could still here my mother laughing in the distance, the wind can do that carry sound very effectively. We had a moment or two together chuckling to each other about what had just gone on and made our way back to camp to tuck into the prepared picnic.
We consumed the picnic quickly, to be honest it wasn’t the best of conditions the wind was howling, mother was dithering although I gave her my jacket for extra protection and father, well he was talking about icicles and all things cold.
We packed up and had a very slow walk back towards the car park. Julie was really struggling, shuffling her feet forward in an awkward motion similar to a geisha girl and a far cry from the woman who only a short while ago accompanied me to the tops of the highest mountains in England and Wales, that’s what CFS /ME does to you it takes every drop of energy and then some more.
We dropped the chairs and bags in the car and headed for a nearby café to have a drink and let Julie recover a little. There we decided to drive a little up the coast to a nearby seaside resort of Porthmadog. On route we passed the impressive Harlech Castle on our right, some glorious long sandy beaches to the left and impressive mountains in the distance. Did you know that going out into the countryside helps to boost endorphins in the brain which makes you feel better so it’s well worth the effort.
We arrived at Porthmadog and parked up by the harbour with some really awesome distant views of the surrounding peaks. We only walked a matter of a few yards when Julie said she just couldn’t go on any further and needed to rest so we ended up in another small café and ordered teas before making our journey home.
Some 30 minutes later we were back in the car and the Sat Nav set for home. Now the thing I like about Sat Navs is they take you places you would seldom pick out yourself. It directed us onwards and upwards through the mountains and we were all impressed with the beautiful scenes we were greeted with at each turn in the road. The endorphins were in overload and Julie was really enjoying what she saw. After we came down from the high mountain scenery Julie decided to put some meditation tapes on her ipod and sank into the chair to relax.
Some two hours later and nearing home she awoke and asked what we were doing about tea. I asked in the back of the car if mom and dad fancied going for a meal, " yes" they both replied so a pub hunt had begun. We settled on a pub on the outskirts of Wolverhampton and found ourselves a suitable table. Looking at the menu I asked what everybody wanted, father bless him said" I’m not hungry I don’t want anything " I reminded him that not more than 5 minutes earlier he said he wanted something" no I didn’t " he replied. Well no point getting stressed about it I thought and eventually we all settled for something small off the menu. Fish and chips twice for mom and dad, gammon and eggs for me and a vegetable moussaka for Julie. Well would you believe it the fish were huge with plenty of fries, I thought he won't finish that being he’s not hungry, but without a grumble the fish and chips were duely despatched.
Meal over and only a short journey back to my parent's house. We dropped mom and dad off who thanked us for a wonderful day out. I presumed father had by this time forgotten about being sand blasted on the beach, so not a bad idea after all lol.
We arrived home a little before 9.00 p.m. so quite a long day for Julie who had struggled a lot with her energy levels, but had some great views and a lot of laughter to remind her of our day out. So my caring for the day was over or so I thought, a little while later in bed Julie began to cry she was so upset and fed up with the way things had turned out because she couldn’t do more due to lack of energy. She then got quite emotional saying "is it ever going to end, I’m making your life a misery". I gave her many words of encouragement and assured her she wasn’t making my life a misery and to concentrate on all the good things we had seen and enjoyed together earlier that day.
She told me that when she gets these emotional feelings there’s nothing she can do to control it and it has to run it’s course. It makes her feel low and lifeless it’s like a hormonal reaction she has no control over.
So after further encouragement and comforting she regained her self composure and confessed, despite how she had felt at times during the day it proved to be a worthwhile experience and she would gladly put herself through it again in the future for the brief moments of feeling like living a normal life.
From my point of view as a carer it’s not easy to plan outings because of the physical restraints but it's worth every effort to share those rare moments of happiness we shared together on the beach with my mother and father. I have said previously we owe it to our partners to make life as normal as possible and with careful planning and thought I will continue to do so.