Nine months on and I still can’t get in the bath or wash my hair. I have to rely on the kindness of family we visit to be able to shower and wash my hair properly. In between visits to family members’ homes I have to strip-wash at the sink and use spray-on dry shampoo.

Social Services have assured me they are going to rip out the bath and installed level access shower, they just can’t say when that will be. In the meantime I have to continue demeaning myself with asking for help and favours to keep myself clean. Except I never actually feel clean.

This all happened only a few weeks before the anniversary of my Dad’s death six years ago. I can hardly believe it has been six years, probably because I re-live the whole three-month ordeal every year. I hate re-living the most stressful three months of my life over and over, but I don’t know how to stop it. It was the last week that was the worst, when I had to stay in the side-room with him and watch him die, knowing there was absolutely nothing I nor anyone else could do about it.

This year, however, in stead of re-living the last day of my Dad’s life, I welcomed two new additions to the family; Wilf and Suki

Wilf

Suki

Aren’t they just gorgeous? They were a welcome distraction on the Sunday they arrived, and have been such a comfort to me since.

Yesterday I had an appointment for physiotherapy. Anyone reading this who suffers from chronic pain, fibromyalgia or anything similar will know that a physiotherapy appointment is a painful experience, even though the therapist is only trying to help. Fortunately I had a sympathetic young lady who was extremely apologetic about the pain she caused me. I found that in stead of being referred for my arms as well as my legs, I had only been referred for help with my knees. Fortunately, Cheryl recognised that my knee, hip and back problems are probably interlinked with each other, and so I have been placed on a waiting list for full rheumatological hydrotherapy, which means I might get a call in February about an upcoming appointment date. She could have just sent me for general hydrotherapy, but she understood that this would be of little or no benefit to me and that in order to actually help me I would need the full course of treatment. Her advice for the meantime was the same as every other doctor/nurse/therapist I have seen: continue doing the pilates exercises I am able to do without causing myself extreme pain. Do they not understand that I am in extreme pain nearly all of the time even with the maximum dosage of pain killers that I am able to take without resorting to morphine?

When I got home yesterday I wasn’t able to do very much at all. In fairness, Cheryl had not done very much to aggravate my pain, merely checked my reflexes, sensitivity and the movement in my knees and hips. That was enough, though. Although I hadn’t needed to demonstrate my hand problems, they were still sore, so that ruled out cross stitch, crochet, knitting, well, everything really except being on the computer. So that’s what I did. I booted up, logged on and surfed the net for a while. I accomplished a lot before the pain in my back and neck persuaded me to knock it on the head for the day. I managed to update my other blog and write a few new pages for it, update Picasa and Flickr update my Ravelry profile and import some music to my harddrive. But then sitting on the uncomfortable dining chair got the better of me, so I went and sat in the living room and re-read Cross Stitch Gold magazine until I had to dish up the dinner. Miraculously enough, after dinner the pain in my hands had subsided a little and so I was able to sew up a crobot‘s head. We watched another episode of Torchwood (I’m not sure I’m all that into it to be honest) and I managed to sew some embellishments onto the crobot. Today I have photographed the finished crobots and uploaded them to my photo feeds. I don’t think I’ll be able to make the orange crème caramel cheesecakes for pudding that I wanted to make, or make up any more crobots today because my hands are so sore. In fact, I’m going to have to knock the computer on the head shortly. Maybe I’ll play with the kittens for a while…

The fibro has been bad for a good few weeks now. I have an appointment to see the Rheumatologists tomorrow and hope that they will be able to tamper with or change my medication because I’m at my wits’ end. I cried on my GP last week and he gave me some new antidepressants to take in conjunction with the one I’m already taking. It has a sedative effect, so I have enjoyed a few nights’ good sleep and I’m feeling better for it. However, I am still having trouble getting up the stairs in time to use the toilet, so I’m reduced to using continence pads, which is not good for the mind.

We went to Blandford on Friday to spend a couple of nights with the in-laws. Saturday morning, hubby and kids got up early and went out for the day, leaving me in be for a lie in. Lovely! Except, when I woke up about 10:30 or 11, I couldn’t get out of bed. I was stuck without my bed leaver. My mother-in-law is a bit deaf and didn’t realise I was stuck, so I had to wait in bed until hubby got back at 3. I was in absolute agony by that time, having missed two doses of pain killers and being stuck in the most uncomfortable bed in the world. I can laugh about it now, but at the time I was embarrassed and really down on myself.

Despite that, I am actually starting to feel more like myself, even though I have only been taking the new medication for a few days. The new tablet brings my daily total to 18, and my weekly total to 126, which is a bit depressing in itself, but today that is not bothering me in the slightest. Maybe it’s because I’ve had a two-day break from the housework and I now have another day’s break from my step-mother duties… Who knows?! Either way, I’m not going to look a gift horse in the mouth; I’m just going to enjoy being myself again.

I was in town yesterday with hubby and the kids and was having a bad day with my legs (it was raining). As a result I was walking slightly slower than usual. A woman overtook me and hit me on the head with her enormous umbrella. It really hurt! So I called out to her to watch what she’s doing with her umbrella because she had just hit me on the head with it.  She apologised and said, wait for it, she “didn’t see” me. Eh? She was overtaking me! I was obviously walking too slow for her liking. She apologised again and I said “ok, just be more careful”. Then her friend butted in and started shouting that it wasn’t like she’d done it on purpose. I didn’t say that she had; only that she should be more careful, and called her on her apparent blindness. Her friend became quite abusive towards me, and it upset me. Which in turn made my pain worse. Why are people so mean?

I have only had my computer set up for just over a week now, and most of that time has been spent installing openSUSE 11.3 and setting up the printer/scanner and wireless, and uploading photos from my camera and editing them.

Now that this is all sorted, I can now start updating my blogs.

I have been suffering a lot more with the fibromyalgia and my knees. I had an X-ray taken of both knees last week, which don’t show arthritic changes so that’s good, but it doesn’t explain the inordinate amount of pain I have been experiencing or the lack of mobility. Social Services have come to visit me at home at my own request because I can’t get in the bath in the new house and so I have been strip-washing at the sink and using dry shampoo. Needless to say, I don’t feel clean. Our bath is a really stupid design and I can’t get in it. Even if I could, there is absolutely no way I could ever get out of the damn thing, hence my request for Social Services. However, although they have to date been unable to help with this particular problem, they have been able to provide me with some equipment to make things a bit easier around the house for me. Items such as a perching stool (which I can’t quite get the right height) and a trolley downstairs and a toilet frame and bed leaver upstairs. I have found the trolley to be particularly useful for carrying drinks through to the living room, since I now have to use my crutch to walk around indoors and so effectively only have one hand. The trolley means I only have to make one trip with the drinks as opposed to several. The toilet frame means I no longer have to call my husband to help me off the toilet, which is very good indeed. I hate having to call for help from the bathroom; it’s embarrassing. The bed leaver is so helpful; it doesn’t just help me sit up in bed and then stand up, but it means it’s a lot easier for me to dress myself, because I can sit on the bed to get dressed and then pull myself up using the bed leaver, or I can hold onto the leaver with one hand while I step into my skirt, then sit down to get hold of the skirt and pull myself up to pull the skirt up to my waist and fasten it. I think I’m still going to need a few more items to help me around the house (a grabber for example, so I can pick things up from the floor when I drop them), and we’re still waiting for the carpenter to come round and put in a second bannister, but the equipment that is here now is so helpful, I don’t know why I waited so long to call Social Services for help!

I still can’t carry things up and down the stairs, or take the basket of laundry outside to hang it on the line if it’s full (or bring it back in for that matter), but for now my husband is able to help me with that, and the kids have been great. Now that they have their own bedrooms we hardly see them, but they are so much happier and always willing to help.

I have also invested in a medication box; the kind with four compartments for each day. I complained to the GP about how difficult I am finding things at home and he asked me to try some new medication to see if it helps. This is to be taken in conjunction with the other pills and not replacing any. So he started me on an anti-inflammatory and also gave me Omeprazole to combat indigestion side effects in light of my hiatus hernia. This means an extra three pills a day, bring my total to seventeen per day (which makes 119 per week) As these tablets are all taken at different times of the day, I kind of need the meds box to help me keep track of which ones I have taken and whether I have missed a dose. It means that I am now more aware of when I need to order repeat prescription, so there’ll be no more emergency requests, so the surgery will be a bit happier with me! Now I just have to try to remember to take my inhalers every morning and evening. I’ve been quite good about it this week, since I put them on the bedside table, so hopefully this will continue.

I feel like I’m falling apart. I really wish I had never had the arthroscopic microfracture of my right knee; I would be a bit more mobile if I hadn’t. But wishing something away is no good, and dwelling on the past is a very bad idea, so I just have to put up and shut up. Some days I feel like I’m going mad, so I do a bit more crochet or knitting or cross stitch (if I can) and normality (eventually) returns. If I hadn’t had the operation I would still be able to do the exercises and pilates that help the fibromyalgia and I wouldn’t be putting on so much weight despite the sparrow-sized portions that I eat.

It is so unfair that I should be so immobile at my age (I’m only 31), and that I should have to rely on the equipment that Social Services have brought here just to manage with day-to-day living and household chores.  I am so desperately lonely, spending most of the day on my own here (the kids mostly stay in their rooms and Jay sleeps all morning) with no one visiting. When I sent out our change of address cards I put an open invitation to people to pop round, but no one has. Even my Mum’s too busy most of the time now that she’s working full time again. I spent so long waiting for Jay to set my computer up that I feel I have lost touch with the friends I have made online.

I’m sure things will get better; they usually do. But for now I’m in a bit of a low patch and can’t see the light at the end of the tunnel.

I expect some of you would probably say that to forget one’s pain medication is a good thing; well unfortunately, the particular medication I am taking takes time to build up in the system, as it works on the Seratonin levels primarily. So although I may not notice my pain levels increase the day I forget to take my meds or miss a dose, I am certainly noticing today; especially since doing so much hard work yesterday.

On top of that, our neighbours decided to have an all-night party last night and kept me awake into the wee hours, and woke me up at quarter to five this morning, at which time I was in so much pain I was unable to get back to sleep. So eventually I got up. It took me a few hours to muster the energy to pull myself out of the bed and get dressed, but here I am. I’d like to have a shower to maybe wake myself up properly, but I’ll have to wait for Jay to wake up in case I fall over or can’t get out of the bath.

Isn’t life great?

Also, I have been so tired these last couple of weeks, that I’m falling asleep in the morning as well as the afternoon – even if I’m doing something! I go to bed at 9pm and read for up to an hour before I go to sleep and I have to get up at 07:30 to get the kids off to school. At least when we move I won’t have to get up quite so early…

The good news, though, is that we are moving to a new house within the next three weeks! I’m looking forward to being there, but not to the actual moving side of it (or the packing and unpacking for that matter). This will be our new kitchen/dining room:

Can you see why I fell in love with it?

This is one of the most moving essays/blogs I have ever read about chronic pain, and Missy very eloquently puts into words the way in which a lot of us with chronic pain (in my case, fibromyalgia) have to cope with pain. I would urge anyone who knows someone that suffers with pain to read this to help you understand what we go through. Thank you, Missy, for sharing this.

via Premature babies ‘more sensitised to pain’ | Life and style | The Guardian.

My sister sent me this link because she thought it “may explain why you’re a wuss!” She was only joking, but I got the gist so I clicked on the link and read the article. She is right: it may well explain my sensitivity to pain, although I don’t think I have always been so sensitive to pain. It is certainly something that should be considered though.

I don’t know whether the children being here are helping the fibromyalgia or whether having the fibromyalgia is helping the children get used to me or what… I do know, however, that the stress is not good for any of us.