A general update

I know I can be terribly annoying talking about the various new things happening medically but then never going back and updating you all. Unfortunately I have the memory of a goldfish, my husband will attest to that. I forget things, I continually ask the same questions  etc. It must drive him nuts some days but he patiently answers those repeated questions.

In April 2014 I was admitted into hospital for a medication trial. Luckily I escaped on the second day, the hospital setting drove me to the brink of hysteria. This was triggered by awful experiences of hospitals in the past.
I was started on 0.25mls Octreotide three times a day before meals. Whilst in hospital I suffered no side effects but with in a few days I was suffering from diarrhoea (neon yellow in colour!) and stomach pain. On the advice of my consultant I stopped the injections for a few days and then restarted them but just once a day. All went really well – it stopped my postprandial episodes, until June which was when I started getting repeated bouts of cellulitis. I decided that I would stop the injections whilst I waited to get rid of the cellulitis. I had four bouts of it in total, by the end of July I had simply got out of the habit of injecting and it fell by the wayside. My postprandial episodes had lessened so I just didn’t use it.

Last week as the episodes had come back with a bang I decided to bite the bullet and start using the octreotide again. I started off on a 0.2ml dose and that has gone really well. As there were no side effects I have increased this week back to 0.25ml, I had got up to 0.3ml before stopping it so I hope to slowly increase it back to that amount. So far so good, the weird thing is I can really feel it wear off with tachycardia coming out of nowhere once I get to the 90 minute mark after the injection. I see my consultant at the hospital in the next few weeks so I will update him them.

Fludrocortisone / Florinef:

I started taking fludrocortisone again back in February 2014 after the tilt table test sent my autonomic nervous system into free fall. Since then its been on and off until January this year when again I have taken another downturn health wise. I am currently taking two tablets a day which I find helps with the tachycardia and palpitations. It does zero for my blood pressure but if it stops the banging heart every time I move I am happy to take it. If I am having a very rough day I will increase to three or even four tablets.

Home Oxygen:

I still have my oxygen concentrator which is an enormous help to me….when I remember to use it. It is very reassuring to have the oxygen concentrator at home so that I don’t have to take a trip to hospital. There are several reasons why I use it, the first one is quite obvious I use it when I feel like I can’t breathe. This tends to happen if I am having tachycardia that wont settle even when resting. It is exhausting when your heart decides to run at a million miles an hour when you aren’t. It feels like you can’t catch your breath, so the oxygen just makes it a lot easier. On occasion it will slow my heart down as well so a double bonus. I also use it when I have a bad migraine, the oxygen seems to reduce the length of the attack and ease the severity of the pain. Since being on the fludrocortisone again I have had a lot more headaches an unfortunate side effect so I find I am using the oxygen more and more.

Back Pain:

Overall my back pain is 100 times better than it was back in August when I could barely get out of bed. I still have bad days and semi bad days usually when I overdo things however some days I can just wake up in agony. I am not brilliant at doing the Pilate’s I seem to have fallen out of the habit. I really need to get back on the case.

My back pain has also moved from being predominantly my lower back and now can be anywhere from the base of my skull down to my tail bone. For the moment I have stopped going to physio therapy as I really don’t believe that my back will get much better than it is now. I completed Pilate’s from the September to the December at a cost of £70 a month. We don’t really have the £70 a month to spend. If I can’t keep my back pain at the level it is now I will go back.

Bladder Problems:

My bladder has been doing much better since I have retrained it to wait for longer until I empty it. So far no infections which was my main concern as my going frequently was a habit I had got into due to recurrent infections. 

I have not cut out caffeine, fizzy drink, artificial sweeteners or the devils juice. This was my decision and just because I have done it does not mean that this decision would be right for you should a medical professional advise you to do the same. I knew that my problems were not related to my consumption of these items but down to a neurological problem. The bladder nurse was trying to treat me for an over active bladder due to me urinating over 26 times in a day. What she couldn’t quite get her head around was that if you drink between 6-7 litres a day you are going to pee more than the national average.

I am being taught how to self catheterise at the end of this week…..I am so looking forward to it. At least this is happening in my home and not in a hospital ward. Knowing how to do this will be an enormous help as my bladder is still refusing to empty properly or completely stop working. I am hoping that by being able to empty my bladder in this way will mean I will not need the district nurses coming around and fitting a catheter with a bag in future. Time will tell. I am sure there will be a blog post following this hilarious fun-filled episode.


I was diagnosed with a vitamin B12 deficiency at the end of the summer. I had the standard 6 injections and then was supposed to be given the injections every 8-12 weeks. After 6 injections it was clear that I needed far more B12 than was being offered on the NHS (despite the NICE guidelines informing doctors of the correct practice). As soon as the B12 injections wore off my neurological symptoms came back. So since then I have been initially injecting every other day. I then spaced that out until every 3 days then every 4 days and now I am down to once a week. Any longer than that and the burning sensation in my left leg and foot comes back. I was obviously a lot more deficient than my B12 test accounted for.

Overall Health:

As I have a hospital appointment coming up in the next few weeks to see the consultant who looks after me for PoTs I have been thinking long and hard about how I am doing. I haven’t seen my Dr since April due to a massive balls up within the hospitals admin department. Hand on heart I can honestly say my health is slowly getting worse each year, which is upsetting and a little depressing. I don’t know where this decline will end and that is scary. No one seems to know or discuss it. 

I am now starting to suffer from random drops in blood pressure when sitting. I am used to my blood pressure dropping like a stone on standing and have coping mechanisms in place for this. What alarms me about this new symptom is it is happening when I sitting with my legs raised. I will be reading or using my Chromebook and all of a sudden the screen will seem to scroll up or down. This is actually my eyes rolling in my head, within a few seconds my heart will feel funny. The only way I can describe it is that I get the sensation you have when you are falling in a dream, only I am awake. The attacks can last for just a few seconds or several minutes. I may get one in isolation or repeated attacks throughout the day. I know that whatever it is that is happening is causing my blood pressure to drop as I have been lucky enough to capture an episode on my BP monitor. This is just crazy and when I put some feelers out within the PoTs community only one person replied and said their son suffers from them.

I worry about these attacks as I have no warning that they will happen. For the moment I have placed myself on a driving ban until they have stopped for a few weeks. I feel like I am hanging onto my independence by a thread. Losing my driving licence – even though I only drive a few times a year would devastate me. Obviously having an accident and hurting other people would devastate me more. It is just that I feel that this illness has taken so much away from me I would hate to lose yet another thing.

Weight loss:

I am still sticking to my diet and I will admit it has been very hard at times. I have lost 21lbs since starting and I am just 3lbs away from what I weighed on my birthday in November which is what my first target was. I still have a long way to go, I am not even half way yet. I have found that reading my cards that I have made up with positive affirmations on them reminding me of the reasons why I want to lose weight etc have been really helpful especially on the days when I am finding it a hard slog.

One last quick update:

 This one is regarding my mum. Those of you who are regular readers may remember I wrote about the length of the waiting list for my mums spinal surgery. She still hasn’t had the operation and has deteriorated further. She saw her surgeon last week after her gp wrote to the surgeon explaining how badly my mum was now doing. Her case has now been marked as urgent and she has completed all her pre-operative tests. She is now just waiting to hear when the operation will take place. Fingers crossed it takes place soon as she really needs it.

Post party blues

It was my birthday Saturday and I am still recovering from the small party we held. Add in a trip to my home town the day before which was an hours drive away and you have an exhausted Rachel, for days on end.
I will admit I ended up with a two day hangover due to the amount of alcohol consumed. Sunday and Monday were mainly spent sleeping and downing fluids like there was no tomorrow. I rarely drink these days, one glass of wine is often enough to leave me slurring my words, so imagine my surprise on Saturday night when I seemed to be able to drink copious amounts without it having its usual effect. I had made my favourite punch Malibu Earl of Paradise Punch recipe here. My friends say this punch is pure evil because it tastes so good but leaves you with a dreadful hangover because you don’t realise how lethal it is. It has become a firm favourite for our gatherings and due to the time of year when we hold our parties I tend to substitute the fresh raspberries with frozen ones, I just make sure they have fully defrosted.
The friends that visited me Saturday night will never see me in the recovery phase. I sometimes wonder if its worth it, I am now 41 and a night partying would take its toll even if I was 100% healthy. However having nothing to look forward to all year and not seeing anyone is not an option. On Saturday night our guests were already asking us if we will be holding another summer gathering like we did this year. The answer is yes because I need something to look forward to during the year. These get together’s are the only time that I see everyone and when you are chronically sick it is sometimes you that has to make all the arrangements. I don’t mind this as our parties have become something of what we jokingly call a “hot ticket”, so few people are invited that it has become very special to those who are. Hubby and I find it hard to get our heads around but it’s very flattering.
I hurt like hell, EDS (Ehlers Danlos Syndrome) is flaring out of control, every single joint from the base of my skull down is throbbing. My fingers have swollen, typing this is a bit of a nightmare due to hitting the wrong keys. Thank goodness for the grammar and spell checker or this wouldn’t make much sense at all. My dysautonomia symptoms are flaring up also, due to being so tired I am finding it very difficult to control my body temperature and I am feeling very breathless. My body is just letting me know that I have pushed myself to the absolute limits and to expect a roller coaster ride for the next few weeks whilst I get back on an even keel.
Please don’t misinterpret what I am saying I don’t feel sorry for myself, I feel angry. I am angry that this condition will not give me a break just for a little while so I can behave like a normal person for a few days without demanding pay back. I was already sore before the party began. I was downing pain medication like it was going out of fashion just so I would make it through the night. I made it through but now I am left with the consequences, hence the title of the post. Trying to be normal is a tiring business.
Many people don’t understand how I can say that I am so sick yet host a party or travel to my home town. What they don’t realise is that it only happens once or twice a year and it takes a month or more of preparation. For two days before my trip to visit my parents I up my fluids, salt tablets and fludrocortisone so that I am better able to cope. The day of the party I rest as much as possible and again drink lots of fluids particularly sports drinks to ensure I am fully hydrated. For the month prior to the party I have a rest schedule that I stick to religiously. Even with all these measures in place enjoying myself comes at a high price and the one thing that really annoys me is the judgement of others within the chronically sick community.
I always get the blues after a period of social activity, it never happens after medical appointments it just happens when I have seen friends or family. The days seem so long and empty afterwards that it makes the isolation seem much worse. Most of the time I can cope with it but always after a gathering it just seems to amplify how very alone I am. Its silly really as hubby is on holiday this week as we both knew how very ill I would be. So technically I am not alone but I am not in the social whirlwind that was last week either. Believe me I am in no fit state to be receiving guests at the moment however it doesn’t stop the longing for some social interaction. It isn’t until you are reminded of what its like to have some company when you haven’t had any for a while that it really brings home to you how isolated you are. The next few days will be hard until I begin to adjust to it again.