Dealing with worsening symptoms

I didn't really keep up with this blog, I felt that dedicating my time  to  concentrating on M.E in a blog could have a negative impact. But things have gone downhill so much this last few months and I am consequently spending more time at home with little energy that I thought I would restart it.

I feel  the M.E symptoms have slowly and steadily got worse this year, and now that I'm struggling and suffering so much, I have had time to reflect. Because I was to fit and active prior to this condition it hit me hard and I never really appreciated just how much progress I made over the years. I was never satisfied with only being able to walk 3 miles, or only work at light activity levels for 5 -6 hours maximum once or twice a week. Now I'm experiencing more severe symptoms again - the worst since the first months of first suffering from it - I realise just how far I managed to push myself and that at my best points in the last few years I could actually manage to do more than some of my "healthy friends".  People would say to me that I couldn't have M.E if I could walk 4 miles,  they couldn't walk that far - I say to them that of course they can walk 4 miles AND they wouldn't suffer for days afterwards like I would. I actually managed a leisurely stroll around some woodlands a few weeks ago with friends, we walked about 3-4 miles in total over a few hours, with a break in a cafe for refreshments. We were all pretty tired by the end, but it was a lovely day out. But come the night time I was in agony, racked in pain, no relief from a hot bath, pain killers or anti inflamatories. I was exhausted but could not sleep the whole night - I never seem to be able to sleep following a more active day. The next few days the pain eased, but I couldn't manage more than simple basic looking after myself at home, having a shower or bath was exhausting, I couldn't dry my hair or cook a home made meal, Every step I took was like walking on the moon, or climbing Everest (without oxygen!). I could not concentrate enough to read, holding a conversation was tiring, and I would get my words mixed up. At least my friends would feel refreshed after a good nights sleep, I never feel refreshed or rested after a sleep.

Now I'm experiencing all those symptoms and more, yet all I'm managing at the very most is walking to the end of my street and back, which is 1/3 of a mile in total. Today my partner took me to the cinema, we parked nearby, so hardly any walking, then I did a little shopping - about 15-20 minutes on my feet. Then this evening I spent 45 minutes in our garden, sitting or lying down, taking photographs of a couple of reptiles. Now I am sat wide awake at 1:30 am, I'm experiencing severe pain in my arms, shoulders, neck and legs, pain killers haven;t touched the pain so 'I'm trying to distract myself to take my mind off the pain. I'm not feeling sorry for myself, I'm perfectly used to the pain.
So tomorrow I;m off to my GP to ask if I can be referred back to the specialist team at Frenchay, the Occupational therapist helped me quite a lot a few years back. I hardly ever visit my GP about the M.E, its a waste of time as there is little they can do about it, basically I've just needed to learn to adjust my lifestyle and pace my activities, but I'm hoping that in the years since I last saw the team there might be new ways they can help.
On the plus side, I've discovered a few good series on Netflix to keep me occupied when I cant get out and about and my brain  isn't functioning enough to read. The difficulty with concentration, and mental functioning is more severe than it has ever been, I seriously struggle to hold conversations at  times. This is the main area that I'm hoping the OT can help me with as I've no idea how to help myself with this and its led to my isolating myself a  bit, I've even stopped going to the camera club mainly because of this inability to function mentally.

If there are any M.E sufferers reading this blog who have experienced worsening symptoms I would love to hear from you about how you coped,