Bouncing back or not ...

Its been over a week since my last adventure (acute urinary retention) and bouncing back I am not.

It seems the cellulitis (x3), the kicking off of my symptoms in February and the latest thing to add to the catalogue of disasters that 2014 has brought, acute urinary retention has depleted any energy reserves I had as back up.

I am back to a state I last saw in early 2007 / 2008, where just getting up and showering is a major achievement. Frustrating doesn't even seem to cut it. It seems 2014 doesn't want to allow me any steps forward but is keen to make all the steps I do take are backwards.

I used to bounce back within a week or two from events such as these. I knew bed rest and cutting back on activities would "reset" my system. It seems that function is no longer available. I am sleeping most afternoons and adding that to what I am sleeping at night and its getting on for over 13 hours a day. Something I haven't done for such a very long time. I know that this means that I am very sick or recovering from being very sick.

Since being catheterised and it subsequently being removed, for over 7 days I was left with reasonably painful bladder spasms that werent really responding to buscopan or opiate painkillers. The only relief I could get was a hot water bottle and to lie down. Only that always kicks my back off especially when you add into the mix that I have been sleeping for 13 hours plus a day. And my electric blanket appears to have died. I didnt think that things could get much worse lol!

Every part of my body is aching, I am struggling to think straight. I have transient moments when I can converse proficiently but the rest of the time I am struggling to follow a conversation or understand most things my husband is trying to talk to me about. Fun it is not.

I am hoping that scaling back on my activities (not that they were vast anyway) and spending more time resting will do the trick. When you have been stable for a few years and then suddenly take a nose dive its scary. Add in that the doctors don't know why my condition is deteriorating or why its come about in the first place? It makes for a bumpy ride.

I try not to spend too much time navel gazing as it gets me nowhere. My mood is low, which is hardly surprising with so much being thrown at me at the moment. I am not depressed I am reacting in a natural way to the events taking place in my life. I can still laugh, smile and look forward to things in the future. I am still enjoying all the things that I always have. I am just so very sick and tired of being sick and tired at the moment.

I apologise for this being such a "down" post.

Post script:
My blog post was completed towards the end of last week and I am happy to report my mood has lifted. Probably helped by spending the day with a dear friend celebrating her birthday.

Unfortunately on Monday night  (30th June) a mosquito or mosquitos decided to bite me 4 times. You can probably guess what I am going to say next......cellulitis, although it could be Skeeter Syndrome. I have one bite on the back of my left hand, that has made it swell up so much you would think I had broken it. Two further down my left arm that have also ballooned and one on my flank which is now deciding to swell and is 5cm in diameter. I am currently waiting for my gp to ring (its got so frequent now that the surgery staff no longer confirm my telephone number!). So more antibiotics and possibly prednisolone will be thrown into the mix. Its never a dull moment here!

Tuesday morning (left hand)

Tuesday Evening left hand

Tuesday Morning Left Arm

Tuesday Evening Left Arm

I am now on antibiotics for the next seven days and have to have a load of blood tests done next week.

Socialising and chronic illness

When you are chronically sick socialising can take a back seat. Either because you are too sick to visit friends or too ill to have them visit. Social networking sites can be a great way to catch up with people but it will never replace the joy that is felt when mixing with real people.

For those of you who follow my antics on my "The Myasthenia kid" page on facebook between blog posts you will be well aware that I am currently getting over some serious socialising. Last Saturday night (7th June 2014) my husband and I held a house party. Nothing too raucous, just 9 friends over for a bbq and some booze. We had planned this party for a couple of months and called it our "40 1/2 birthday party" as a bit of a laugh.

My husband managed to get the day of the party off work and basically did all the cleaning and prep work for the party to ensure that I rested as much as possible during the day so that I could enjoy myself during the evening.

The insomnia gods were not on my side last week, two nights were spent without sleep one of them being the night before the party. Due to the bad storm in the early hours of Saturday morning, even without the insomnia I wouldn't have slept as my three hounds are absolutely terrified of thunder and lightening.I did try to get some sleep once the storm had passed but it wasn't to be, I managed to go 24 hours without sleep.

How I got through the party I will never know. If it had involved leaving the house at all, I would have in all honesty cancelled. Not only had I gone without sleep but over the last week my bowel adhesions have started to kick off and on Saturday my stomach started to bloat with gastroparesis. It doesn't make for a glamourous look and by 1030pm I had changed into my yoga pants, snuggle top and a pair of slippers. I know how to rock the party look.

My guests were brilliant, they may not know or understand what is wrong with me - I display no outward signs, like many others with an invisible illness but they all pitched in getting their own drinks, tidying up their plates and rubbish and telling me off when they felt I was doing too much. Thats the kind of guest I like at my party ones who help and don't sit back expecting to be waited on hand and foot, purely because these days I just cant do that. No one said a word when I changed into my casual gear after looking so glam, all they want is for me to enjoy myself and relax in their company. Friends like that don't come into your life too often! 

What my friends won't see is the length of time it will take me to recover from the party. It could take weeks or even months such is the severity of the arse kicking my body will give me for enjoying myself. Much of yesterday was spent asleep. Today so far has been spent lying on the sofa. Luckily hubby has a late start today and hes done all the household jobs he could fit in before he left for work. I am thankful for his late start today even if it means he wont get home until after 10pm because it means I can lie in bed all day and not feel guilty for not spending time with him. The guilt I feel is enormous when I spend time away from him, in bed when he is home.

In preparation for the party I ensured Mondays blog post had been completed the week before. I naively thought I would be ok after the party (I never seem to learn) to write Thursdays post ( today's post) during the week. I feel so awful I have scrambled together this post to ensure something is published whilst I recover!

Every part of my body hurts and on Saturday night it was no different such is the consummate professionals performance. I quietly topped up my painkillers on a trip to the loo, I injected my octreotide without drama, my only concern being I was wearing a white top and if it bled ( as it sometimes does) I may have to explain the stain. The only sign that I was flagging was getting changed out of my party gear and the wedge shoes that I swear were crafted by the devil himself. Even sitting down those shoes were killing my feet! I am a fashion victim and theres not a woman in the world who hasn't endured pain to look good!

At least I have my shellac nails to remind me of what a good time I had. On the morning of the party I treated myself to a manicure and pedicure, partly because I wanted to look nice and partly as a way to stop me using up too much energy panicking that the house was tidy for the party. It did take up a lot of energy and by the time my toenails had been painted my legs were shaking with fatigue caused by holding them in the same position. Its silly things like this that remind you how sick you really are no matter how many times you try to convince yourself and the outside world that you aren't.

I love socialising and seeing friends, my body doesn't and that's the choice I make. To put up with my body wreaking its revenge on me for trying to be "normal" for once. Sometimes it feels like too higher price but I will never give up.

Frankie feeling a bit like me after the party!

A quick update : Tuesday 10th June, I have now developed cellulitis in my right hand, first finger so I am back on antibiotics. Having spoken to the dr she thinks my immune system is very low at the moment and hence why I am struggling to get rid of the cellulitis. I am back on antibiotics and now have a skin lotion that is antibacterial to apply three times a day. If I am honest I am feeling a bit sorry for myself!

Cellulitis - I am taking a battering

For the last week or so I have been battling to stay out of hospital due to a nasty bout of cellulitis. Its unfortunately made me quite poorly, dropping my blood pressure, causing excessive fatigue and making my postural orthostatic tachycardia syndrome symptoms run wild. So I am afraid I haven't been up to much writing so I apologise if this isn't up to my usual standard.

A week ago when we eventually got some glorious sunshine in the UK I decided to take advantage of it, as for the first time in around six months I had some energy. I spent the Saturday cleaning up our small garden. When I say cleaning up the garden, I mean shuffling around on my bottom washing down the pots that hold our ornamental grasses. It took several hours and it was hard work for someone who hasn't been able to do anything for a while. I worked for too long and pushed myself too hard as those of us with a condition like Ehlers Danlos syndrome and dysautonomia are prone to do when we suddenly get a surge of energy! I wish I would learn not to do this but I never seem to.

As I undressed that night with hubbys assistance, I notice a tiny red mark on my right knee. As it was so small I quickly ran my fingers over it to see if it was a splinter, I had been wearing jeans so I couldn't understand where the mark had come from but at times during the day I had knelt on the decking. I couldn't feel anything and it wasn't hurting so I just went to sleep thinking nothing more of it.

On Sunday I woke up and my right leg was sore, my hamstring was particularly painful and my right knee had developed two blisters and was looking a little pink. I brushed it off as possibly blisters from kneeling, I am prone to developing blisters on my skin very easily, anything where my skin rubs against a surface continually and I will develop a blister. Shoes are a nightmare and as a child my feet would develop blisters even when wearing shoes that I had owned for months and had been worn continually. So you can see why I brushed it off.

As the day progressed my leg became quite sore and by the afternoon walking was becoming an issue. I grabbed an elasticated bandage and strapped my leg up from my ankle to my thigh. I elevated my leg for the rest of the day presuming that it would sort itself out. I have a great tendency to ignore injuries because they happen so frequently.

By Monday my knee was boiling hot and everytime my jeans caught my knee it was sheer agony. I presumed I had an abscess on my knee as I am prone to abscesses due to having the skin condition hidradenitis-suppurativa. By Tuesday my knee was looking like this

It was agonisingly painful, swollen and burning hot. I knew at this point that I had cellulitis and rang my doctors surgery. My gp who was working from home that day rang me back within 30 minutes and agreed with my diagnosis! I was given a 7 day course of flucloxacillin 250mg 4 times a day. It took a good 48 hours for the red ring that had formed around the red centre to subside. The whole time I felt pretty rough with a temperature and just generally unwell.

By Tuesday my knee was looking like this

The swelling had greatly reduced, the red ring that had surrounded it had gone and I was feeling a lot better. I rang my gp to inform him of the progress and it was agreed that I would keep an eye on it. As I was no longer in pain I didn't push for more antibiotics, the reason being that I have real difficulty in swallowing capsules due to my EDS. For some reason capsules get caught in my gullet and I end up with them stuck in the back of throat for ages which causes burning and foul tasting burps! Sorry if thats too much information. I know now that I should have pushed for them as by late Friday evening the fact that infection had not cleared quickly became apparent.

On Saturday morning my knee had swollen up again and my whole knee had turned pink. It was itching like crazy and I was scratching myself to the point of drawing blood. Probably down to the EDS making our skin more fragile. I ended up calling 111 (in the UK thats the number you call when the doctors surgery is closed, they offer advice and assistance) and getting them to place a call to Devon Doctors on call. I was told that it was likely that it could be up to six hours before I received a call back and two hours if I was really lucky. The call handler told me should my condition worsen and I hadnt heard from a doctor, I would have to call 111 again and they would decide what to do eg call an ambulance or get the doctor to ring me as priority. As my knee wasn't as painful or as bad as it had originally been I wasn't unduly concerned. After all last time I had waited 3 full days before seeking advice.

Within 30 minutes the doctor rang me, I explained what had been going on with my knee and immediately he prescribed flucloxacillin but at the dose of 500mg. He asked that for the first three doses I double up the tablets to hit the infection hard. The normal dose would be 1 tablet 4 times a day equalling 2g of antibiotics. The prescription was faxed to my local pharmacy and my father collected them for me so I could start them immediately. This is how my knee looked on Saturday morning

As you can see its no where near as bad as when it first started but my knee had swollen and with the threat of a hospital stay and IV antibiotics I was much quicker to act.

It explains why all last week I was starting to feel quite ill again and why my postural orthostatic tachycardia syndrome was misbehaving so badly. I felt so weak and fatigued I really couldn't understand why.

The antibiotics are making me feel quite nauseous but I am happy to report 24 hours after taking them I have really noticed a difference my knee is much less swollen and the itching has reduced. The pink area has reduced in size however it is still extremely hot to the touch.

For more information about cellulitis you can click on this link NHS Choices. Cellulitis is a nasty infection that left untreated can quickly lead to septicaemia. My sister has been hospitalised in the past with it, hers was on her face as a complication from a horrendous sinus infection that lead to an abscess on her brain. I've never suffered with it before however due to the steroids I have been taking to alleviate the awful PoTs symptoms I've been having since february I think my immune system just couldn't cope.

Of course nurse Frankie has been looking after me whilst I recover!