My last update was just over a month ago. The fluoxetine is still managing my Raynaud’s symptoms well, and overall I am feeling great. I find it much easier to deal with social situations and my feelings about myself are a lot more positive.
I went to a meeting of a professional organisation I belong to. I had never met any of my fellow attendees. I had never been to the venue before. I am proud of myself for (a) actually going and (b) managing to come across mostly not like a wierdo. It felt like a big achievement. The next meeting is next month and I’m looking forward to it (I think).
The only negative I am experiencing with the medication at the moment is that it makes me SO HUNGRY ALL THE TIME. I’m like an eating monster. I could eat constantly. And I could eat pretty much anything and everything. I think I’ve managed to negate some of the hunger by taking the pill just before lunch – the really strong hunger hits about an hour after taking the pill and timing lunch for that point helps for the rest of the day.
It’s amazing. No regrets.
Despite feeling well enough to do around one hour of walking every day, I have still managed to put on about half a stone in weight. I’d like to say I’m dealing with it by eating sensibly, but I’ve just noticed the pile of nougat wrappers scattered around me … I must try harder.
WARNING: this post contains descriptions that are a bit icky. And self-pity.
I think colds trigger a form of amnesia when they are over because I never remember just how awful my last one was until I get a new one. I’ve contracted a “summer cold” which is dreadful and I need to have a little whinge about it. I’m sure you are thinking “oh Ellory, it’s just a cold” but you aren’t currently dealing with the following:
This is a roll of pure misery.
- The trauma of brushing your teeth twice a day while battling a runny nose. You can’t tell what is snot and what is toothpaste, and you have to breathe awkwardly through your mouth while you do it. It gets even better when you try to floss between sneezes.
- The inability to sleep properly. The sneezing won’t stop until you have been lying there for what seems like centuries and then when you do sleep, you can’t breathe through your nose. Breathing through your mouth makes your sore throat worse and gives you a mouth that feels like sandpaper. You wake up because you are thirsty, and then start sneezing again.
- There are snotty tissues seemingly everywhere and you lose track of where you have left them. The box of tissues is soon empty and you find yourself using loo roll instead because you can’t face the supermarket. The loo roll is fine for its normal purposes but it isn’t nose-friendly. Your already sore nose gets worse.
- A nose that runs as soon as you attempt to do anything. This is particularly inconvenient when picking up dog poo or putting the washing out. You have to wash your hands every 5 seconds for fear of spreading your horrible germs to others.
- The annoyance of sneezing. Other people start to get annoyed because you keep sneezing all the time, but there is nothing more annoying than being the person who is doing the sneezing. Your stomach muscles start to hurt, and you spill hot tea down yourself during a particularly violent sudden sneeze.
- Well-meaning relatives or friends suggest you drink whatever their version of a hot toddy is. If you are really unlucky and they really love you, they will make it for you and then sit with you as you drink it. You will attempt not to look as stricken as you feel. If you are really really unlucky, you will be given a lemsip.
- The inability to do anything without feeling sorry for yourself and whining about it like a small child. I’ve developed a whiny sort of self-pitying laugh that occasionally drifts into a mucusy cough.
Next week I will be back in the ranks of those who have forgotten just how miserable a cold is and I can’t wait.
So, I have been on fluoxetine for nearly two months and I have secured a repeat prescription because it is working so well. I had some initial concerns about how it was making it me feel a little disengaged with serious situations – I caught myself looking at the sky instead of the road when I was driving and from then on I had to make myself really concentrate. That seems to have sorted itself out now; I’m not easily distracted or careless. I am also finding it a little hard to sleep at the moment, but that could be because I am worried about the political and economic situation in the UK, but most of all I am worried about my cat (he won’t eat). The insomnia is something I might have to monitor.
Goodbye, alcohol. I won’t miss you.
I also know that I can’t drink any alcohol while I’m taking fluoxetine. I know it isn’t recommended and I found out the hard way why. I didn’t think a couple of glasses of fizzy wine would affect me as much as they did. It was like having a terrible hangover mixed with heightened anxiety: a deep feeling of sicky dread. I couldn’t really speak to anyone or handle being in public the next day. It was just awful. Alcohol is not worth it.
However, most of the time I feel great. I’m starting to get a little annoyed with the sound of my own voice though. I’m not really a talker, but that seems to be changing. I chatter on quite a lot more and I find myself seeking the company of others when previously I would have gone to bed and watched TV. I talk to my friends a lot more and I have no problems reversing my car when people can see me (my three-point turn is particularly excellent again). We went out for a meal with the extended family last week, and my aunt said it was nice to have the ‘happy’ me back. Maybe I was more down than I thought I was. I do know I haven’t had such a good laugh with my cousin in a very long time.
I had to have a hot water bottle last night, but I think I just will have to occasionally. My anxiety manifests itself as Raynaud’s, and there will never be no anxiety.
He should be coming home this evening, but it isn’t all good news.
This isn’t my cat but he looks a lot like this.
My mum woke me up this early morning by coming into my room and almost yelling at me that something was wrong with my cat. He has diabetes so my first thought was that he was hypoglycemic. I have nightmares about him being hypoglycemic. It’s my job to regulate his blood levels and if I don’t do a good enough job, then he could die.
I couldn’t sleep last night and I saw him at 4 o’clock. He’d been out all night in a thunder storm – he looked like a drowned rat. I dried him and he did his usual happy purring and then bumped his head against me repeatedly. He was bolshie, sturdy and sparky, but staying out in the rain is not like him at all.
By 06:30, he was wobbling about all over the place, unable to stand up properly, and determined to pace round and round in circles. If you have ever seen an animal after they have had a stroke (unfortunately I have) they look and behave just as he did. I rubbed a solution of sugar and water onto his gums (which was difficult because he has a tiny mouth for a big cat) and then phoned the vet. They were able to see him straight away; they have always been excellent with all of our animals and it is such a reassurance to know we have them nearby.
The vet was brilliant with him and said they would do some tests to see if it was a stroke because his diabetes was so well managed.
It turns out they can’t tell if he had had a small stroke, but he was definitely hypoglycemic. I feel so guilty. I don’t know how it could have happened. I measure his food and I’m really careful about doing his injections. The vet said they are doing further tests to see if his insulin dosage is too high.
The other bad news is that the tests have revealed that his kidneys are starting to fail. He is over 18 years old and he has done so well so far. We are going to discuss diet options when I pick him up this evening.
The vet told me she had started him on specialist food already, and that he was stuffing his face happily. I hope we can get the diabetes back under control and the kidneys can be helped. He’s such a happy cat, even when he is pretending to be in a grump, that it wouldn’t be right to lose him just yet.
The medication is still working, hurrah! I don’t want to get ahead of myself and think/say my Raynaud’s is under control – I thought that briefly when I was taking nifedipine and it didn’t last – but I’m feeling good. In fact, the medication is working so well I find myself almost missing some of my symptoms. Not the shaking or the terrible pain, but the coldness had its advantages:
- I’d forgotten what it was like to get uncomfortably warm and start sweating. I hadn’t had a sweaty back and a shiny face for at least a year before this week. I DID NOT miss that sensation. Yuck.
- “I don’t know what to wear today”/”Are my arms/legs/middle bits looking chubby?”/”I haven’t got a clean bra that is suitable to wear under that top”. These thoughts didn’t matter because I could just wear a jumper and some jeans. I didn’t have to worry I would get too warm because that never happened. Jumpers are great. Especially because I’m lazy. I also saved loads of money because I didn’t need any summer clothes.
- I could sleep comfortably under a 10- or 15-tog duvet during the summer. I could wrap up and be all cosy like a very cosy thing. I didn’t feel uncomfortable or worry it was too hot to get to sleep; I just slept.
- I could get away with not doing all the washing up and other attack-triggering chores. It’s not like the rest of the housework has stopped being responsibility now I’m feeling better.
Don’t get me wrong, Raynaud’s. I don’t like you, but sometimes you weren’t absolutely awful. I’ll give you that.
I have been fortunate to feel much better this last month or so. Today is a low day. I think I might have caught something that is making me feel bad, rather than the Raynaud’s resurfacing by itself. As a creature of habit (and routine), there are a few things I do when I don’t feel well:
- Take my contact lenses out and wash my face. I can’t nap with contact lenses in and there’s something about make-up on my face when I’m poorly that just makes me feel worse.
- Put my pyjamas on. I wear joggers when I’m home but even those are too uncomfortable when I’m feeling sorry for myself.
- Get into bed with a big warm blanket. Because being warm and comfortable immediately makes me feel a bit better.
- Eat something bad for me. Sometimes it’s crisps, sometimes it’s ice cream. Today it’s bread and butter pudding. (I’m trying not to think about how bread and butter pudding is bread + butter + sugar + milk + cream + egg with a few added raisins. Raisins are good though. I’ll focus on that.)
- Watch something funny, whimsical or scary. Sometimes it’s a film such as Hot Fuzz (“It’s just bolognese!”), sometimes it’s Criminal Minds (if I’m not the only one home). Today it’s Murdoch Mysteries (because I adore Constable Crabtree).
So now I’m off to eat some raisins, with added bread and butter … and custard. Enjoy a snippet of the two Andys:
When I was young, I used to write letters quite often. I usually wrote to my great aunt, but I also had a pen pal for a short time. I wrote a letter to include with a present I sent a few months ago to a friend I wasn’t able to visit for her birthday. It seems to have rekindled my interest in letter writing.
I have only one school friend left that I am close to, but she moved away because of work. It takes 9 hours to drive to see her and my bank account can’t take that sort of punishment at the moment. (Not to mention I don’t think my hands can grip a steering wheel for that long any more.) She has been struggling with a chronic illness and she is the sort of person who finds it difficult to talk about just how hard things are for her. It’s very easy to forget about people when you don’t see them regularly, but I wanted her to know that I haven’t forgotten her.
She contacted me via text a few months ago but didn’t respond when I asked after her health (she had asked after mine). So after some thought, I decided to write her a letter. It’s more personal than a text – I sound more like me; I can express myself more authentically. I also hope it might be easier for her to talk about how she is by letter. I wrote that I hoped to hear from her soon, after I had written about events in my life I thought she would be interested in and asked about hers, but I didn’t lay down the expectation that she should write back. I just wanted to give her that option if she wished to take it up. It’s a difficult line to tread: to let someone know you care about them and are there for them if they need you, but not to make them feel pressured to discuss things they may not wish to.
I sent the letter earlier this week. Now I can only wait and see.
I have been on fluoxetine for over a month now. I think it is still going well. I’m fairly warm, even when others are saying things like ‘ooh, isn’t it cold’ and ‘who would have thought it’s June?’ I have some aches and pains, but they aren’t nearly as bad as they were.
I don’t feel quite as relaxed about everything as I did when I first started taking it, but I know it is still making a difference: my car wouldn’t start and I just asked for a lift and forgot about it for the afternoon – previously I would have worried so much I wouldn’t have been able to enjoy lunch with my friends. I did feel a wave of anxiety later when we tried and failed to jump start it. But now I feel OK; it’s not the end of the world. I’ll get a new battery. I am also very quick to laugh and see the funny side of things at the moment, and I think that is a much healthier attitude.
I had one day last week where I was very cold and couldn’t stop shivering – I got into bed with a hot water bottle and was fine when I woke up a few hours later. My mum asked if the attack was because I was worried about something, but if I was it was subconscious. A few days later I did a lot of walking and I was very achy in the evening – not just my legs but also my arms. I think that was a combination of extra activity and worrying about my non-starting car.
Despite the two incidents above, this is the best my Raynaud’s has been for over a year. Things are looking positive.
Last month I posted about my continuing journey with Raynaud’s. I had tried 3 medications without any success, but the fourth one is currently doing the trick. It is an anti-depressant, usually used for depression and anxiety disorders.
(In case anyone with Raynaud’s is reading this, the medication is fluoxetine.)
I’m rarely overly cold, and I have even been able to get to sleep without a hot water bottle. The warmer weather is helping, but I know that last year the warm weather didn’t make much difference! I think the medication has allowed the warm weather to help.
I had one evening where I felt an extremely high level of nausea – I don’t think I have felt that sick even when I have actually vomited. I got into bed and listened to The Infinite Monkey Cage. The nausea is now occasional and nowhere near that bad.
I have really noticed a difference in my anxiety levels (perhaps unsurprisingly). I did know that stress and anxiety were triggers for an attack for me, so this medication is working on both aspects. However, I did some work-related training recently, and I am slightly concerned that I wasn’t as worried about getting it all right as I usually would be. I should get feedback sometime this week, so it will be interesting to see if it affected the work or just my experience of doing the work.
So, in sum, new medication mostly good. So far.
I don’t mean in terms of my personality, although sometimes I am a bit frosty. I suffer from Raynaud’s syndrome.
It has been a long journey from the first symptoms to a sort-of diagnosis. The consultant has more ruled other things out than determined it unequivocally.
Raynaud’s is actually a fairly common condition (hello to any fellow sufferers!). You can read more about it on the NHS website. It affects the blood supply to the extremities; my blood vessels go into a sort of spasm and block the flow of blood. That spasm is, for me, almost permanent. My feet were often blue (they looked like they belonged to a zombie) and my fingers were completely white.
I spent about 6 months permanently cold, and I don’t mean a little bit chilly – I mean agonisingly, bitterly cold. I developed a vitamin D deficiency because I spent so little time outside unless I was completely wrapped up. I often need a hat, gloves and big coat just to make going outdoors bearable.
I have tried three different medications so far with varying levels of success. The first left me warm but with the uncomfortable sensation of strongly feeling my own heart beat and legs that looked like I had been boiled. The next took away the pins and needles and the stabbing pains in my hands, but left me cold, achy and with excruciating pains in my feet. The current medication seems to be having little effect at all – I’m having trouble moving my hands and I think I am experiencing life at about 10°C lower than most other people.
There is one more medication that the consultant thinks I could try. I will ask to give it a go at my next appointment in May. I’m currently sat in bed under a big blanket, feeling sorry for myself. Some of my future posts will likely be related to dealing with and experiences of Raynaud’s, but I will try not to make them glum!